Claire E Wakefield

All Publications

• The power of words: evaluating the role of qualitative methods in cancer research. The Lancet. Oncology Graetz, D. E., Sisk, B. A., Salek, M., Blazin, L. J., Wakefield, C. E., Tarbi, E. C., Thorne, S., LeBlanc, T. W., Hinds, P. S., Traeger, L., Kaye, E. C. 2026; 27 (2): e73-e83

  Abstract

  This Review underscores qualitative research as an indispensable facet of scientific inquiry to improve provision of safe, effective, and affordable care for patients with cancer worldwide. Representing a global working group of applied qualitative researchers, our multidisciplinary authorship team defines qualitative research, characterises its purpose and value, and describes specific ways in which qualitative inquiry is central to advancing cures, treatment, and quality of life in oncology. In this Review, we put forward an imperative for the use of qualitative methods to assess context, understand population needs, design interventions, optimise implementation, and investigate mechanisms of action underpinning changes in health outcomes. We highlight the ways in which qualitative methods capture cultural context, making them crucial for scientific inquiry, and discuss the importance of using qualitative research to define research priorities, uncover and address understudied topics, and elevate marginalised voices globally. Ultimately, this Review serves as a call to action for improved integration of qualitative scholarship across each stage of cancer research and establishes a roadmap for collaboration among clinicians, scientists, publishers, and funders to recognise qualitative research as essential for scientific advancement in the field of oncology.

  View details for DOI 10.1016/S1470-2045(25)00669-2

  View details for PubMedID 41643711

• Australian patients' experiences of undergoing whole exome sequencing for fetal structural anomalies prior to receiving results. Journal of genetic counseling Long, S., Evans, H. E., Wakefield, C. E., Kasparian, N. A., McGillivray, G., Roscioli, T., Firriolo, A. M., Parmar, J., Kelada, L. 2026; 35 (1): e70158

  Abstract

  While whole exome sequencing (WES) in pregnancy for fetal structural anomalies (FSA) has become increasingly feasible in Australia, parents' experiences of undergoing WES for FSA are poorly understood. This study explored the experiences of participants undergoing prenatal WES for FSA in Australia. Forty expectant parents from 28 parent-fetus trios were interviewed prior to receiving WES results, and interviews were analyzed using inductive content analysis. Participants consistently expressed a desire for as much information as possible about their unborn child (n = 17), describing this as a "quest for knowledge." The waiting period for results was identified as an especially difficult and emotionally taxing aspect of WES during pregnancy (n = 12). Overall, participants reported mostly positive experiences with healthcare professionals, noting the importance of compassionate and supportive care (n = 21). Many couples also considered termination of pregnancy as a possible outcome if a diagnosis was confirmed through WES (n = 13). These findings suggest that a nuanced understanding of participants' experiences can help guide clinical practice. Improvements may be achieved by expediting testing processes, ensuring supportive and compassionate healthcare interactions, and facilitating sensitive discussions regarding termination of pregnancy if families feel ready to engage with this potential option. The future of genomic sequencing in pregnancy will rely on providing supported access to clinical testing and ensuring laboratories deliver fast, accurate results during this critical period for prospective parents.

  View details for DOI 10.1002/jgc4.70158

  View details for PubMedID 41588784

• Evaluating patient perspectives about the acceptability of a novel prognostic gene expression signature for high grade serous ovarian cancer: The OTTA-SPOT study. Gynecologic oncology Evans, H. E., Firriolo, A. M., Houweling, R., Kelada, L., Stannard, G., Frawley, J., McGill, B. C., Ramus, S. J., Lee, Y. C., Friedlander, M., Duggan, J., Wakefield, C. E. 2025; 204: 150-157

  Abstract

  The Ovarian Tumor Tissue Analysis consortium - Stratified Prognosis of Ovarian Tumors (OTTA-SPOT) 101 gene expression signature, predicts 5-year survival on a tumor biopsy at diagnosis and identifies the 20 % of patients with a 10 % probability of 5-year survival with standard of care therapy, who may benefit from alternate treatments. This study aims to understand how patients with ovarian cancer perceive the potential advantages and disadvantages of OTTA-SPOT, their willingness for the test, and preferred methods of receiving test results.Participants were eligible if they had a diagnosis of ovarian cancer and resided in Australia or New Zealand. Participants completed a mixed-methods questionnaire, co-designed with consumers, which investigated their perspectives about prognostic tests for ovarian cancer. Participants could opt-in to a 1-1.5-h online focus group to discuss their perspectives further.Thirty-three participants completed the online questionnaire. Participants perceived the potential advantages of the prognostic test outweighed the disadvantages, and 88 % would be 'very willing' or 'willing' to undergo prognostic testing if available. Nine participants took part in focus groups. We developed four themes from thematic analysis of these discussions: (1) Cancer journey and context, (2) Advantages and disadvantages of knowing prognosis, (3) The complexities of when to receive prognostic information, and (4) Communication and service delivery.Participants with ovarian cancer viewed prognostic testing positively. However, successful implementation will require a patient-centred approach that accommodates diverse preferences around how the test is introduced, and results are communicated.

  View details for DOI 10.1016/j.ygyno.2025.11.023

  View details for PubMedID 41351943

• Animated videos for childhood cancer precision medicine: development and evaluation with parents and patients. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Gereis, J. M., Hetherington, K., Robertson, E. G., Daly, R., McGill, B. C., Ziegler, D. S., Wakefield, C. E. 2025; 33 (12): 1108

  Abstract

  Previous research shows that families find concepts underpinning childhood cancer precision medicine challenging to understand. We developed three animated videos and then evaluated these videos' acceptability, accessibility, emotional impact, and impact on participants' understanding of precision medicine.Eligible participants included adolescents and young adults with cancer (12-25 years) and parents of a child (< 25 years) with cancer who recently enrolled in a precision medicine trial. Participants evaluated the videos using a questionnaire containing validated and purpose-designed quantitative and qualitative items.Twenty-three parents and five patients participated. Over 70% of participants rated each video as 'just right' in length, pace, and amount of information. Almost all felt the videos provided useful information about the precision medicine process (nparents = 19/20, 95%; npatients = 4/4, 100%) and would recommend the videos to other families (nparents = 18/20, 90%; npatients = 4/4, 100%). After watching the videos, parents' perceived understanding of key precision medicine concepts increased (p ≤ 0.011 for all items, e.g. possible risks and discomforts). Similarly, watching the videos increased parents' self-rated knowledge of all precision medicine-related terms that were initially poorly understood (p ≤ 0.016 for terms including 'precision medicine' and 'germline variant'). Qualitatively, participants reported valuing the videos and provided constructive feedback to improve the concision and quality of the videos.Parents and patients responded positively to the videos about precision medicine for childhood cancer and felt they would benefit other families. The videos are a potentially useful complement to written consent information and clinical discussions to support understanding of complex precision medicine concepts.

  View details for DOI 10.1007/s00520-025-10191-8

  View details for PubMedID 41272172

  View details for PubMedCentralID 6670204

• Navigating the complex landscape of childhood dementia: caregiver psychological well-being, grief, and health system challenges. Journal of pediatric psychology Nevin, S. M., Kelada, L., Elvidge, K. L., Maack, M., Hilton, G., Kershaw, J., Da Ros, E., Briggs, N. E., Farrar, M. A., Wakefield, C. E. 2025

  Abstract

  This study used the Supportive Care Needs Framework (SCNF) to examine the psychological well-being of caregivers of children with dementia and their experiences navigating health and disability systems, including financial hardship.Caregivers and bereaved caregivers, whose child died from a dementia, completed an online questionnaire and semi-structured interview. We adopted a convergent, mixed-methods approach, combining quantitative and qualitative results to enhance the interpretation of caregivers' experiences and priorities.Seventy-six caregivers completed the questionnaire, 19 of whom had more than one child affected and 15 of whom were bereaved caregivers. Eighteen caregivers (14 females/4 males; 7 bereaved/11 non-bereaved) participated in interviews. Quantitative data highlighted elevated psychological distress, with 70% scoring moderate-to-severe anxiety, 30% meeting criteria for severe pre-loss grief, and 39% of bereaved caregivers reporting severe, prolonged grief. Integrated qualitative and quantitative data underscored that insufficient psychosocial services and inadequate information navigating and accessing essential health and disability services markedly exacerbated caregiver distress, especially in the context of their child's multifaceted, complex, and progressive needs. We identified key domains evidencing caregivers' unmet needs and priorities, emphasizing the urgent need for specialized models of care and tailored family-centered psychosocial supports, responsive to the fast-changing and progressive needs of children and families.Caregivers of children with dementia experience critical unmet needs and shoulder enduring burdens throughout the course of their child's progressive decline and following bereavement. Coordinated centers of expertise, equipped to deliver expert medical and integrated psychosocial support, are essential to more effectively support families affected by childhood dementia.

  View details for DOI 10.1093/jpepsy/jsaf095

  View details for PubMedID 41223047

• Unmet supportive care needs of family caregivers of children with cancer in India. Journal of pediatric nursing Tutika, T., Chittem, M., Namjoshi, S., Patil, V. C., Kelada, L., Wakefield, C. E. 2025; 86: 44-50

  Abstract

  Caring for a child with cancer is a profoundly challenging experience and caregivers often face unmet support needs, which may vary based on demographic factors. This study assessed: 1) the unmet needs of caregivers of children with cancer in India, and 2) how caregivers' unmet needs were related to demographic factors.Using a cross-sectional design and purposive sampling (for the patient's condition and duration of care), family caregivers of paediatric cancer patients (n = 135) in Hyderabad, India were surveyed using the Cancer Needs Questionnaire-Parents and Carers (CNQ-PC) to assess unmet needs. We examined the data using descriptive statistics (frequency reporting 'high' or 'very high' needs), t-tests and Chi-squares.Six of the top ten unmet needs related to caregivers' 'feelings': including coping with seeing the young person in pain (89 %), and feeling guilty for neglecting others (73 %), sad/depressed (56 %), anxious/nervous (55 %), scared (53 %), and confused (44 %). Families who lived further away from (versus closer to) the treating hospital were more likely to report unmet needs, including managing to pay for the young person's nonmedical items (t(133) = -2.77, p = .006) and knowing how to support the young person (t(133) = -2.96, p = .004). Parent income and parent education were also related to unmet needs.Caregivers of children with cancer in India face significant unmet psychosocial needs, especially those from lower socioeconomic backgrounds and those travelling long distances for treatment. Enhancing supportive care services, particularly for emotionally distressed caregivers and families facing geographic and financial barriers, is crucial.

  View details for DOI 10.1016/j.pedn.2025.10.029

  View details for PubMedID 41205248

• Data Sharing, Biopsies and Patient Confidentiality in a Precision Medicine Trial for Childhood Cancer: A Mixed Method Study of Parents, Oncologists, and Scientists' Perspectives. Journal of personalized medicine Lei, Y., Hetherington, K., Daly, R., Rensen, N., McGill, B. C., Ziegler, D. S., Lau, L. M., Tyrrell, V., Karpelowsky, J., Cowley, M. J., Tucker, K. M., Haber, M., Barahona, P., Wakefield, C. E. 2025; 15 (11)

  Abstract

  Background/Objectives: Precision medicine is transforming care for children with cancer, but raises new challenges. We explored parents', oncologists' and scientists' perspectives on three aspects of a precision medicine trial for poor prognosis childhood cancer: data sharing, requests for additional tumor biopsies, and confidentiality. Methods: Data were collected through PRISM-Impact, a psychosocial sub-study within the Zero Childhood Cancer Program's PRISM trial. Parents completed questionnaires at enrolment and one year later, and an optional interview after receiving their child's trial results. Bereaved parents completed a questionnaire six months after bereavement (T1B). Oncologists and scientists were interviewed one year following trial commencement. Quantitative data were analyzed descriptively, and qualitative data thematically. Results: Parents (n = 126) considered additional tumor biopsies acceptable when risks were low and their child or oncologist supported the request. Oncologists (n = 26) emphasized weighing risk-benefit, ensuring parents felt fully informed, and research value. Most parents supported data sharing (≥89-96%), including after bereavement, despite potential privacy concerns. Parents supported overseas and interstate testing, and scientists having access to identifiable health information. Scientists (n = 10) found working with identifiable data emotionally challenging. Conclusions: Parents, oncologists, and scientists showed high acceptance of procedural aspects of precision medicine. Future trials should address privacy concerns and ensure informed consent recognizes that parents' high acceptability of procedures may be linked to their hopes for benefit, reinforcing the need for informed consent.

  View details for DOI 10.3390/jpm15110531

  View details for PubMedID 41295233

• Connect, pause and reflect: Multidisciplinary clinicians' shared challenges and sustaining strategies caring for children with Severe Neurological Impairment. European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society Nevin, S. M., Le Marne, F. A., Kelada, L., Wakefield, C. E., Beavis, E., Macintosh, R., Palmer, E. E., McLoughlin, R., Sachdev, R., Nunn, K., Bye, A. 2025; 60: 15-23

  Abstract

  Patients with Severe Neurological Impairment (SNI) have progressive conditions of the central nervous system, resulting in permanent cognitive and motor disabilities and enduring hypercomplexity. This study aimed to explore clinicians' shared psychosocial experience of caring for families of children with SNI, including the challenges, and components of care that bring clinicians meaning and purpose, to identify resource pathways to sustain clinicians.We purposively recruited multidisciplinary clinicians with expertise caring for patients with SNI to participate in a series of four sequential and semi-structured reflective practice workshops. We recorded workshops and performed a qualitative content analysis, following verbatim transcription.We conducted sixteen workshops with multidisciplinary clinicians including paediatricians (n = 14), paediatric neurologists (n = 5), allied health professionals (n = 3), clinical geneticists (n = 2), clinical nurse specialists (n = 2), a paediatric nephrologist (n = 1), a neurosurgeon (n = 1) and a metabolic specialist (n = 1). Workshops focused on three primary domains: 'the struggle', 'making a difference' and 'finding purpose and meaning'. Clinicians acknowledged psychosocial challenges and the limits to their medical expertise, emphasising the importance of ongoing reflective practice and proactive multidisciplinary collaboration to sustain themselves and empower patients. In the final workshop series, clinicians identified their preferences for multipronged, multimodal resources, centred on connection, reflection, and support.This research provides in-depth insight into how multidisciplinary clinicians caring for patients with SNI cope with challenges and gain meaning and purpose in their role. Co-designed clinician interventions, coupled with integrated and structured reflective practice will address identified challenges and foster clinician meaning and purpose, in supporting their patients.

  View details for DOI 10.1016/j.ejpn.2025.10.006

  View details for PubMedID 41232234

• Australian research priorities for inherited retinal diseases: a James Lind Alliance priority setting partnership. BMJ open Robertson, E. G., Hetherington, K., Prain, M., Ma, A., Ayton, L. N., Jamieson, R. V., Shepard, E., Boyd, L., Hall, J., Boyd, R., Karandrews, S., Feller, H., Simunovic, M. P., Grigg, J. R., Yamamoto, K., Wakefield, C. E., Gonzalez-Cordero, A. 2025; 15 (9): e100301

  Abstract

  Inherited retinal diseases (IRDs) are a broad range of diseases associated with abnormalities/degeneration of retinal cells. We aimed to identify the top 10 Australian research priorities for IRDs to ultimately facilitate more meaningful and potentially cost-effective research.We conducted a James Lind Alliance priority setting partnership that involved two Australian-wide surveys and online workshops.Australia-wide.Individuals aged 16 years or older were eligible to participate if they had an IRD, were caregivers of an individual with an IRD or were health professionals providing care to this community.In Survey 1, we gathered participants' unanswered questions about IRDs. We grouped these into summary questions and undertook a literature review to verify if they were truly unanswered (ie, evidence uncertainties). In Survey 2, participants voted for the uncertainties that they considered a priority. Top-ranked uncertainties progressed for discussion and final prioritisation in two workshops.In Survey 1, we collected 223 questions from 69 participants. We grouped these into 42 summary questions and confirmed 41 as evidence uncertainties. In Survey 2, 151 participants voted, with the 16 uncertainties progressing to final prioritisation. The top 10 priorities, set by the 24 workshop participants, represented (1) treatment/cure; (2) symptoms and disease progression; (3) psychosocial well-being and (4) health service delivery. The #1 priority was for treatment to prevent, slow down or stop vision loss, followed by the #2 priority to address the psychological impact of having an IRD.The top 10 research priorities highlight the need for IRD research that takes a whole-person, systems approach. Collaborations to progress priorities will accelerate the translation of research into real-world benefits.

  View details for DOI 10.1136/bmjopen-2025-100301

  View details for PubMedID 41027690

• How We Approach the Integration of Psychological Services in the Care of Children With Cancer Predisposition Syndromes. Pediatric blood & cancer Hanania, J. W., Shepherd, R. F., Wiener, L., Sharp, K. M., Similuk, M. N., Denburg, A. E., Wakefield, C. E. 2025: e32065

  Abstract

  The psychosocial aspects of pediatric hereditary cancer range beyond initial coping with the genetic diagnosis and are situated across the lifespan and continuum of care. Over the past 20 years, a growing body of evidence has demonstrated the need for tailored support to identify and manage psychosocial concerns of pediatric patients with, or at risk of, a cancer predisposition syndrome (CPS). As the unmet needs of young people with a CPS continue to grow, the importance of psychology in the genomic era has expanded. This paper discusses how psychologists can be integrated with inter- or multi-disciplinary teams to address complex psychosocial needs.

  View details for DOI 10.1002/pbc.32065

  View details for PubMedID 40958770

• Social Participation Among Long-Term Survivors of Childhood and Adolescent Cancer. Pediatric blood & cancer Schilstra, C. E., Ellis, S. J., Sedger, A., Burns, M. A., Miller, K., Wakefield, C. E., Cohn, R. J., Lah, S., Sansom-Daly, U. M., Anazodo, A. C., Fardell, J. E. 2025: e32042

  Abstract

  BACKGROUND: The impact of cancer treatment on the social participation of childhood and adolescent cancer survivors remains understudied. Social participation is an important determinant of long-term social outcomes. Therefore, this study aimed to describe the proportion of a cohort of Australian childhood and adolescent long-term cancer survivors experiencing social participation challenges post-treatment.METHODS: Survivors aged 8-25years (1-10years post-treatment) were recruited from a childhood cancer survivorship clinic. Self-report surveys assessed clinical/demographic characteristics, and perceived levels of social participation before/after cancer treatment. Survivors were invited to an optional, semi-structured interview about the impact of their cancer experience on their social participation.RESULTS: A total of 52 children/adolescents (Mage = 11.9 ± 2.7years) and 21 young adults (Mage = 20.5 ± 2.1years) participated. Approximately 16%-36% of children/adolescents and 14%-43% of young adults perceived a decrease in social participation post-treatment (most children/adolescents did not report on pre-diagnosis participation). In interviews, survivors discussed physical and mental health challenges that occurred during their cancer treatment that affected their social participation, with limited mention of challenges after treatment.CONCLUSION: A subset of survivors of childhood and adolescent cancer experiences social participation challenges. However, qualitatively, survivors' descriptions of social challenges centered on their experiences during treatment, rather than after. This suggests that even in the absence of current challenges, some survivors perceive a lasting impact of their cancer experience on their social participation. These findings highlight need for larger, longitudinal mixed-methods studies involving tailored, evidence-based measures of social participation to document changes in the prevalence and course of social participation challenges for post-treatment survivors.

  View details for DOI 10.1002/pbc.32042

  View details for PubMedID 40947532

• Recapturing Life: Virtual Peer-Based Psychological Support for Adolescent and Young Adult Cancer Survivors Delivered in the Community. Journal of adolescent and young adult oncology Irestorm, E., Wakefield, C. E., Hetherington, K., McGill, B. C., Evans, H. E., McDonald, F., Patterson, P., Beattie, A., Cohn, R. J., Sansom-Daly, U. M. 2025

  Abstract

  Purpose: Adolescent and young adult (AYA) cancer survivors have unique psychological needs and require tailored support, as they transition from hospital settings following cancer treatment. This study aimed to evaluate the safety and clinical effectiveness of the online "Recapture Life" program to improve AYA aged survivors' psychological adjustment in early cancer survivorship. Methods: The intervention was delivered in community settings, by trained psychosocial staff at partnering cancer-support organizations. The participants received seven cognitive behavioral therapy-based online sessions six weekly 90-minute group sessions and a booster session. A pre-post design was used, where participants completed patient-reported outcome measures at intake, and 6 months after intervention completion. Measures assessed psychological distress, cancer-related problems, peer support, and program benefit/burden. Results: Thirty 13-39-year-olds with mixed cancer diagnoses (mean time since diagnosis 2.9 years) completed both assessments. We did not find evidence that the intervention reduced psychological distress. However, 6 months after completing Recapture Life, AYAs reported fewer cancer-related problems (t(29) = 2.63, p = 0.003) and improved peer support (t(29) = 8.04, p = 0.015), with medium effect sizes. Most participants reported no program burden (72%) and found Recapture Life at least somewhat beneficial (79%). Most (73%) reported staying in contact with AYAs from their group post-intervention. Conclusion: Six months after completing Recapture Life, AYAs reported having more peer support and fewer cancer-related problems. This study addresses a well-documented gap in psychological services tailored to AYA survivors' needs. Recapture Life delivered in the community addressed areas of concern for the AYAs and may teach adaptive skills for survivors adjusting to life after cancer treatment.

  View details for DOI 10.1177/21565333251369689

  View details for PubMedID 40794486

• The Rhythm of Connection: Describing the Heartbeats Intervention for Patients and Families Receiving Paediatric Palliative Care. Children (Basel, Switzerland) Evans, H. E., Ralph, M., Jaaniste, T., Wakefield, C. E., Sansom-Daly, U. M. 2025; 12 (7)

  Abstract

  Music therapy in paediatric palliative care offers a unique opportunity for emotional support, legacy creation, and therapeutic connection for children and their families. This paper describes the Heartbeats Intervention, as delivered by a paediatric palliative care music therapist at Sydney Children's Hospital Australia. This intervention involves recording and creatively integrating the heartbeats of children and family members into personalised musical compositions. Originally inspired by music therapist Brian Schreck's work, the intervention has evolved to meet diverse therapeutic goals, from soothing children with serious illnesses (including cancer) with recordings of their families' heartbeats to creating legacy song tracks that support families through bereavement. Despite some logistical and resource challenges, the intervention has been well-received and continues to expand, including the integration of environmental soundscapes and broader community involvement, which allows the intervention to be experienced by a greater number of families. This paper contributes to the limited but growing literature on music therapy in paediatric palliative care, highlighting the Heartbeats Intervention as a flexible and meaningful way to enhance psychosocial support and connection for children and their families. Further research to evaluate its long-term impact and to explore children's direct experiences of the intervention is needed.

  View details for DOI 10.3390/children12070884

  View details for PubMedID 40723077

• Risky, protective, and screening health behaviours among childhood cancer survivors: A cross-sectional survey in Australia and New Zealand JOURNAL OF CANCER SURVIVORSHIP Ha, L., Signorelli, C., McLoone, J. K., Wakefield, C. E., Alchin, J. E., Venkatesha, V., Cohn, R. J., Fardell, J. E. 2025

  Abstract

  Childhood cancer survivors are at risk of late effects. Engaging in health behaviours may reduce this risk. We aimed to investigate engagement in risky (alcohol consumption, smoking), protective (sun protection, physical activity, dental hygiene), and screening (cervical screening, skin examinations) behaviours between survivors and an age- and sex-matched control group.We conducted a cross-sectional survey in childhood cancer survivors (aged 16 + years) who were 5 + years post-diagnosis, proxy report of parents of survivors (aged < 16 years) and age- and sex-matched non-cancer controls. We compared survivor responses to the Children's Oncology Group Long-Term Follow-Up Guidelines.612 survivors (median age = 19, range = 7-61; 49% male) and 423 controls (median = 21, range = 0-45; 51.5% male) were included in our analysis. Survivors were more likely to smoke less (p < .001), floss less (p < .05), use sunscreen (p < .001), wear protective clothing (p < .001), stay in the shade less (p < .01), and engage in skin examinations (p < .001), compared to controls. Most survivors met alcohol (72%), smoking (93%) and sunscreen (66%) guidelines. Fewer survivors met guidelines for physical activity (31%), flossing (4%), wearing a hat for sun protection (40%), skin examinations (40%) and cervical screening (43%). Survivors who were older age, female sex and had higher income were associated with meeting all health behaviour guidelines.Many survivors do not meet protective and screening behaviour recommended guidelines.Engagement in multiple positive health behaviours is critical for this population who are at increased risk of developing long-term health issues.

  View details for DOI 10.1007/s11764-025-01858-6

  View details for Web of Science ID 001520772700001

  View details for PubMedID 40593442

  View details for PubMedCentralID 5798235

• Bridging the Gap: Embedding Psychosocial Oncology Research into Comprehensive Cancer Care for Children and Young People. Cancers Sansom-Daly, U. M., McLoone, J. K., Fardell, J. E., Evans, H. E., McGill, B. C., Robertson, E. G., Signorelli, C., Ellis, S., Ha, L., Hetherington, K., Houweling, R. E., Nevin, S. M., Schilstra, C. E., Mitchell, R., Haber, M., Cohn, R. J., Wakefield, C. E. 2025; 17 (13)

  Abstract

  The National Cancer Institute designated models of comprehensive cancer care centres endeavour to enable the delivery of high-quality, holistic cancer care, informed by research evidence across the cancer care trajectory. These comprehensive cancer centers have typically been adult-oncology-focused, leaving an important gap and opportunity to consider what a model of comprehensive cancer care might look like for children and young people. With the advent of the opening of the first comprehensive children's cancer center in Australia and the southern hemisphere, this commentary considers the important role that psychosocial oncology needs to play in driving high-quality, person-centered comprehensive cancer care for all.

  View details for DOI 10.3390/cancers17132123

  View details for PubMedID 40647422

• How Classmates Experience Visiting Their Hospitalised Peer During Cancer Treatment: A RESPECT Study. Journal of advanced nursing Boensvang, N. N., Fridh, M. K., Wakefield, C. E., Bidstrup, P. E., Larsen, H. B. 2025

  Abstract

  AIM: To explore how classmate 'ambassadors' experienced and engaged in social interaction while visiting a hospitalised peer undergoing cancer treatment.DESIGN: A phenomenological-hermeneutic inspired exploratory study.METHODS: Using on-the-go semi-structured interviews and participant observations from January to December 2023 in Denmark, we included 27 school-aged ambassadors aged 6-18years old; 18 participated in pre- and post-visit interviews, while all 27 took part in observations during 19 visits. Van Manen's phenomenological-hermeneutic approach guided thematic analysis.RESULTS: Six themes emerged: (1) visiting the hospital, (2) being supportive, (3) aligning expectations, (4) being unsure, (5) safeguarding the relationship and (6) leaving the hospital. Ambassadors were eager to visit, seeking to be good friends by offering social, emotional and physical support. They were mindful of the information shared to prevent the hospitalised children from feeling excluded. Social interactions often involved allowing the hospitalised children to take on decision-making roles, recognising their well-being as a priority.CONCLUSION: Ambassadors found hospital visits meaningful as they wanted to make a difference and sought to support their hospitalised peers. Their role was shaped by their understanding of friendship and the disease trajectory. Social interactions were largely conflict-free due to the pre-visit alignment of expectations.IMPLICATIONS FOR PROFESSION OR PATIENT CARE: Classmates found visits meaningful and wished to make a difference. Healthcare professionals should facilitate visits to strengthen social connections between the hospitalised child and their surroundings as a part of family-centred care within paediatric oncology.IMPACT: Problem: Cancer treatment often causes social disruption for children with cancer, making the transition to everyday life more difficult post-treatment.MAIN FINDINGS: Classmates were eager to visit hospitalised peers, demonstrating awareness of cancer and a desire to support them.RESEARCH IMPACT: Facilitating classmate visits may enhance classmates' understanding of cancer and aid hospitalised children's reintegration into everyday life.REPORTING METHOD: The COREQ checklist was used.PATIENT OR PUBLIC CONTRIBUTION: Ambassadors contributed to designing the interview guides.GLOBAL CLINICAL CONTRIBUTION: Enhances knowledge of supporting social relationships between hospitalised children and their classmates during cancer treatment. However, the RESPECT study is rooted in the Danish cultural context, where it is common to attend local volunteer activities after school. Although getting diagnosed with a life-threatening illness such as cancer may be difficult to talk about with peers and even a taboo in some countries, we do expect that interventions with structured possibilities for social interactions are an important step towards normalisation of communicating about childhood cancer.

  View details for DOI 10.1111/jan.70017

  View details for PubMedID 40524522

• Clinical Practice Guideline for the Management of Communication and Swallowing in Children Diagnosed With Childhood Brain Tumor or Leukemia PEDIATRIC BLOOD & CANCER Docking, K. M., Hodges, R., Campbell, L., Chami, S., Knijnik, S. R., Campbell, E., Paquier, P., Dalla-Pozza, L., Wakefield, C. E., Waugh, M., Messina, M., Morgan, A. T. 2025; 72 (7): e31749

  Abstract

  Childhood brain tumor and leukemia (CBTL) and their treatments can have negative effects on development, including communication and swallowing. Clinical practice guideline recommendations for managing communication and swallowing difficulties in children diagnosed with CBTL were informed by (i) a systematic review using the GRADE approach to rate certainty of evidence; (ii) GRADE Evidence to Decision Framework involving an international panel of experts; and (iii) a Health Professional and Consumer survey. To improve outcomes and quality of life, children with CBLT should have access to communication and swallowing assessment and intervention from cancer diagnosis, throughout and after treatment, and across survivorship.

  View details for DOI 10.1002/pbc.31749

  View details for Web of Science ID 001483201400001

  View details for PubMedID 40329445

• Development of a World Health Organization international survey assessing the lived experience of people affected by cancer: outcomes from pilot testing, user feedback, and survey revision SUPPORTIVE CARE IN CANCER Schilstra, C. E., Wakefield, C. E., McLoone, J., Wiener, L., Donoghoe, M. W., Hoffman, R. I., Echodu, M., Ortiz, R., Ilbawi, A., Cayrol, J. 2025; 33 (5): 445

  Abstract

  Assessing differences between lived experiences of people affected by cancer internationally facilitates direction of international health policies and standards. The study piloted, on behalf of the World Health Organization (WHO), a global survey assessing the lived experience of people affected by cancer. We aimed to determine (1) the acceptability of the survey and (2) the survey's capacity to capture a globally representative sample of people diagnosed with cancer.The cross-sectional survey went through two pilot rounds. We (1) solicited feedback from international cancer organisations through a feedback form, and (2) launched a global online survey, requesting open-ended feedback on the survey format/content from people diagnosed with cancer, their family members/caregivers, and bereaved family members.Round one: 23 stakeholders found the survey acceptable in length/content. Minor suggestions were to improve readability/applicability across healthcare settings. Round two: 505 individuals participated: 177 (35%) provided feedback on the study design (e.g. to include people currently being treated for cancer, and siblings) or survey (e.g. assessing impacts of multiple cancers). Participants seemed to value the opportunity to share their experiences: "Thanks…felt good to answer as if someone was listening." Compared with global statistics, our sample of people diagnosed with cancer (N = 240) included significantly more females (p < 0.001) and individuals from high-income countries (p < 0.001).Participant feedback informed important changes to the survey design and content. Our findings highlight that engaging with people with lived experience is a critical first step to develop such a global survey, optimise participation, and amplify individuals' voices.

  View details for DOI 10.1007/s00520-025-09372-2

  View details for Web of Science ID 001480760400003

  View details for PubMedID 40317296

  View details for PubMedCentralID PMC12049296

• The Lived Experience of Childhood Cancer Survivors and Their Parents: A Multi-National Study of Access to Survivorship Care and Information and Support Needs. Pediatric blood & cancer McLoone, J. K., Wakefield, C. E., Glasson, N., Wiener, L., Ortiz, R., Ilbawi, A., Schilstra, C. E., Hoffman, R., Cayrol, J. 2025; 72 (5): e31593

  Abstract

  Lifelong follow-up care for childhood cancer survivors (CCS) is recommended and ideally involves both medical and psychosocial care. It is important for CCS and their families to be adequately informed about what to expect after cancer treatment completion to ensure they receive appropriate care. This study aimed to describe patterns of access to survivorship care among a multi-national sample, as well as examine unmet information and support needs, for CCS and their parents.An online survey, developed by pediatric psycho-oncology experts and people with lived experience of pediatric cancer, was distributed by the World Health Organization. This study presents a subanalysis from these data.Participants included 102 parents of CCS (94 females, mean age 45 years, mean time since child's diagnosis 9 years), and 43 CCS (28 females, mean age 31 years, mean time since diagnosis 21 years) from 17 countries. Thirty-five percent of CCS (13/37) were not accessing survivorship care. Most parents (95%; 97/102) and CCS (76%; 31/41) reported a desire for discussion of emotional impacts following cancer treatment completion; however, this did not occur for 69% (70/102) of parents and 46% (19/41) of CCS. Additionally, 92% (93/102) of parents and 83% (33/41) of CCS reported an unmet need for more information about what to expect after cancer treatment. Most CCS (54%; 22/41) reported feeling "somewhat-not at all" supported by healthcare professionals in the period after cancer treatment.Discussions regarding emotional well-being and ongoing needs post treatment are lacking in cancer survivorship care worldwide.

  View details for DOI 10.1002/pbc.31593

  View details for PubMedID 39937551

• Psychosocial Outcomes in Parents of Children with Acute Lymphoblastic Leukaemia in Australia and New Zealand Through and Beyond Treatment CANCERS Parker, C., Schilstra, C. E., McCleary, K., Martin, M., Trahair, T. N., Kotecha, R. S., Ramachandran, S., Cockcroft, R., Conyers, R., Cross, S., Dalla-Pozza, L., Downie, P., Revesz, T., Osborn, M., Marshall, G. M., Wakefield, C. E., Mateos, M. K., Fardell, J. E. 2025; 17 (7)

  Abstract

  Background/Objectives: Parents of children with acute lymphoblastic leukaemia (ALL) experience emotional distress throughout their child's treatment course. This study describes the psychological experience of Australian and New Zealand parents of children diagnosed with ALL. Methods: This prospective, longitudinal study assessed distress, anxiety, depression, anger and the need for help in parents of children with newly diagnosed ALL across eight sites between October 2018 and November 2022. Psychological symptoms were quantified using the Emotion Thermometer (ET) tool and Patient-Reported Outcome Measurement Information System (PROMIS) questionnaires. Participants were recruited within ninety days of chemotherapy commencement, with surveys distributed bimonthly thereafter. Results: One hundred and seventeen participants completed 327 survey responses spanning 0 to 62 months post-diagnosis. Parental distress peaked within the first 6 months and 40% of parents reported clinically significant symptoms across four or more domains as measured by our questionnaires. Anxiety was the most consistently elevated symptom, with over 50% of responses above the clinical cut-off. Depression and the need for help also peaked closer to diagnosis and declined over time. In contrast, anger remained stable, with 27% reporting clinically significant scores across all time points. Increased time since diagnosis was significantly associated with reductions in distress, anxiety and depression scores. Conclusions: Australian and New Zealand parents experience high levels of psychological distress within the first six months following their child's diagnosis of ALL. A notable minority continue to report elevated distress levels over time, identifying a need for improved psychological support for family wellbeing throughout the ALL treatment trajectory.

  View details for DOI 10.3390/cancers17071238

  View details for Web of Science ID 001463602700001

  View details for PubMedID 40227813

  View details for PubMedCentralID PMC11987963

• Impact of a digital physical activity intervention on reducing sugar-sweetened beverage intake in young childhood cancer survivors. British journal of cancer Ha, L., Signorelli, C., Cohen, J., Neville, K. A., Wakefield, C. E., Cohn, R. J. 2025; 132 (7): 583-584

  View details for DOI 10.1038/s41416-025-02965-y

  View details for PubMedID 40021722

  View details for PubMedCentralID PMC11961660

• Cancer genetic counseling via telegenetics and telephone: A qualitative study exploring the experience of patients and genetic counselors in an Australian cancer genetics context. Journal of genetic counseling Finney, J., Fargas, V., Gonzalez, T., Taylor, N., Wakefield, C. E., Tucker, K., Turbitt, E., Williams, R. 2025; 34 (2): e1982

  Abstract

  The demand for direct-to-patient (DTP) telegenetics (genetics services delivered via videoconferencing) in genetic counseling practice has rapidly increased, particularly since the COVID-19 pandemic. Recent telegenetics literature is mostly quantitative and not in the Australian context. A qualitative interview study was conducted to address this gap. This research investigated the experiences of patients and genetic counselors (GCs), enrolled in a randomized controlled trial, using telegenetics and telephone for cancer genetic counseling appointments. Twenty-eight semi-structured interviews with patients (n = 22) and GCs (n = 6) were conducted following patient randomization to either a telephone or telegenetics genetic counseling appointment. The interviews explored participant's experiences of telegenetics and compared DTP telegenetics with telephone and in-person delivery. Codebook thematic analysis was used to develop topic summaries from the data. Patient and GC participants noted positive experiences of telegenetics; with key benefits reported as reduced travel time, time and cost saving, ease, convenience, efficiency, and comfortability. Technical issues and privacy concerns were highlighted as potential disadvantages of telegenetics. All but one patient felt sufficiently emotionally supported while using telegenetics. Telegenetics has both benefits and limitations; however, generally, this cohort found telegenetics to be a suitable and acceptable mode of delivery for genetic counseling with many advantages over in-person or telephone appointments. Further studies should be conducted to provide evidence for the long-term implementation of telegenetics, regardless of any future COVID-19 pandemic lockdown restrictions.

  View details for DOI 10.1002/jgc4.1982

  View details for PubMedID 39370552

  View details for PubMedCentralID PMC11953582

• Whatever It Takes: Parents' Perspectives of Patient-Derived Xenograft Mouse Models for Poor Prognosis Childhood Cancer. JCO precision oncology Robertson, E. G., Hetherington, K., Hunter, J. D., McGillycuddy, M., Venkatesha, V., Lau, L. M., Khuong-Quang, D. A., Ziegler, D. S., Wakefield, C. E. 2025; 9: e2400840

  Abstract

  Patient-derived xenograft (PDX) models are used in precision medicine to identify treatments that may be more effective for an individual patient's molecular tumor profile. We explored parents' perspectives of using personalized PDX mouse models to potentially guide treatment recommendations for their child enrolled in Precision Medicine for Children with Cancer (PRISM), a precision medicine trial for poor prognosis cancer.We report on interview data collected from a mixed-methods study examining families' experiences of PRISM. We interviewed 57 parents about their understanding and perceptions of the use of PDXs in PRISM. We analyzed quantitative data using linear models and Fisher-Freeman-Halton exact tests and qualitative data via inductive content analysis.Overall, 83% of participants deemed PDXs acceptable. This is despite 51% of participants being aware that PDXs were a part of PRISM and the majority having little-to-no understanding of the technology. Of the 14 potential advantages/disadvantages of PDXs presented, participants rated that "accessing the right drug more quickly" as most important and "testing will involve harming animals" as least important. Several parents had concerns around animal models although some preferred mouse models over zebrafish as they felt that mice were more human-like and thus more valid. Participants expressed that they would sacrifice an unlimited number of mice for their child, yet only 63% endorsed a willingness to use up to 1,000 mice per patient. Willingness to use more mice appeared to be associated with parents' sense of urgency for a cure and perceived likelihood of benefit for their child. Regardless, most participants (96%) indicated that the number of mice used in PRISM would not have affected their decision to participate.Our study indicates that despite having minimal knowledge, parents consider the use of PDX mouse models in precision oncology to be acceptable.

  View details for DOI 10.1200/PO-24-00840

  View details for PubMedID 40209140

• The PreGen Research Program: Implementing Prenatal Genomic Testing in Australia-A Commentary. The Australian & New Zealand journal of obstetrics & gynaecology Long, S., Schofield, D., Kraindler, J., Vink, R., Ross, K., Hart, N., Evans, H., Wilson, A., Hyett, J., Wakefield, C. E., Kelada, L., Scott, H., Lunke, S., Wall, M., Buckley, M. F., Fernihough, G., McGillivray, G., Roscioli, T. 2025

  Abstract

  Prenatal genomic sequencing, which can provide a significantly increased diagnostic rate for fetal structural anomaly (FSA) compared with karyotype and microarray, is not available uniformly across Australia. PreGen, a 5-year translational research program, has identified significant barriers to implementation including access to funding, the availability of genomic testing, access to termination of pregnancy services and the availability of specialist genomic centres. A federal item number for prenatal genomic testing would increase equitable test availability and reduce delays to diagnoses by making them in pregnancy whilst removing the need for low-yield diagnostic interventions and enabling personalised patient management and family support.

  View details for DOI 10.1111/ajo.13936

  View details for PubMedID 40123302

• Engage: A Survivorship Program to Improve Childhood Cancer Survivors' Self-Efficacy and Quality of Life. JCO oncology practice Signorelli, C., McLoone, J., Wakefield, C., Donoghoe, M., Alchin, J. E., Johnston, K., Baldwin, R., Thornton-Benko, E., Webber, K., Foreman, T., Neville, K., Cohn, R. 2025: OP2400815

  Abstract

  We evaluated a survivorship program Engage, aimed at improving childhood cancer survivors' health-related self-efficacy and their health-related quality of life (HRQoL).Engage provides (1) a telehealth nurse-led health assessment, (2) a remote multidisciplinary case review, (3) personalized recommendations and care plan for survivors and their primary care physician (PCP), and (4) a telehealth nurse-led consultation to promote survivors' understanding of the recommendations. We recruited survivors >5 years postdiagnosis of any age who had not received cancer-related care in the past 24 months. We assessed survivors' outcomes pre-intervention and at 1-, 6-, 12-, and 24-month follow-ups.Seventy-eight survivors participated: 62% male, median age = 30 years, and 14% lived regionally/rurally. Participating survivors' self-efficacy scores improved from baseline to 1 month and were maintained at 6-, 12-, and 24-month follow-ups (P < .001). Survivors' HRQoL remained similar from baseline to postintervention, as did the proportion of survivors reporting a regular PCP or engaging in health/risky behaviors (eg, exercise). Survivors' distress, anxiety, and anger significantly decreased pre- to 6 months postintervention. Survivors' satisfaction with care increased by 28% (P < .001) and was maintained across follow-up (P = .002). Information needs reduced from baseline to 1 month postintervention (P = .023) although they were similar at further follow-up.Survivors' self-efficacy, satisfaction with care, and some psychosocial outcomes improved after participating in Engage. Further effort is needed to improve survivors' primary care engagement and health behaviors.

  View details for DOI 10.1200/OP-24-00815

  View details for PubMedID 39977713

• Building capacity to treat childhood cancer in Papua New Guinea: 'It's a multidisciplinary village'. Journal of global health Raj, T. A., Harrison, J., Wakefield, C. E., Daur, B., Felmingham, B., Casey, M., McLoone, J. K., Sullivan, M., Staffieri, S. E., Anga, G. 2025; 15: 03008

  Abstract

  Childhood cancer outcomes in low- and middle-income countries are impacted by the presentation of advanced disease and limited diagnostic and treatment resources. Papua New Guinea is highly populated with significant health coverage and workforce difficulties, in addition to unique geographical and political challenges affecting childhood cancer care. With improvements in communicable disease management, childhood cancer care has become an emerging need, managed by a dedicated service in Port Moresby General Hospital (PMGH). A longstanding partnership between PMGH and the International Society of Paediatric Oncology Oceania has facilitated the development of a cancer registry, education/training, research, and technical support. We describe an in-country visit comprising a tailored childhood cancer workshop for health care workers, with advocacy and collaboration efforts. Goals included education, childhood cancer registry implementation, clinical support, stakeholder engagement and supply of practical resources. Outcomes include enhanced nursing capacity with the establishment of a national oncology nurses association for peer support and ongoing educational opportunities. Key learnings include identifying palliative care as an unmet need, unique cultural aspects allowing for future targeted education, further collaboration on adapted treatment regimens, and formalised multidisciplinary meetings for enhanced practice. This partnership demonstrates the positive effect of strong local champions partnering with supportive peer relationships in global oncology.

  View details for DOI 10.7189/jogh.15.03008

  View details for PubMedID 39946562

  View details for PubMedCentralID PMC11825119

• Survivorship care plan utilization in Australia and New Zealand: survivors', parents' and healthcare providers' perspectives. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Hill, R. E., Fardell, J. E., Mercieca-Bebber, R., Wakefield, C. E., Signorelli, C., Webber, K., Johnston, K. A., Cohn, R. J. 2025; 33 (3): 182

  Abstract

  As part of survivorship care, many health authorities recommend survivorship care plans (SCPs). The aim of this study was to understand survivors' SCP receipt and use, clinical/demographic factors associated with use, and providers' SCP practices.We surveyed Australian and New Zealand survivors of adult and childhood cancer (including parent proxies for survivors aged < 16 years). We fitted binomial logistic regression models to examine the relationship between survivors' clinical and sociodemographic characteristics, and SCP receipt. We also surveyed oncology health providers regarding current SCP provision practices, perceived receipt, and usefulness.We recruited 1123 cancer survivors (499 adult cancer survivors and 624 childhood cancer survivors, including 222 parent proxies) and 21 healthcare providers. 10.7% of adult and 22.0% of childhood cancer survivors recalled receiving SCPs. SCP receipt was more likely for adult cancer survivors diagnosed with prostate cancer, low-risk cancer diagnoses and older at study participation, and childhood cancer survivors treated with chemotherapy or younger at study participation. Across both groups, a higher level of education attainment was predictive of SCP use. Most healthcare providers estimated that < 15% of adult and > 75% of childhood cancer survivors received SCPs.Few survivors of adult or childhood cancer reported receiving a SCP, and there were sociodemographic and clinical differences in those who did and did not receive and use their SCP. SCP recipients used and valued them, but healthcare providers indicated potential areas for improvement with SCP provision. Consideration may be needed regarding SCP format, presentation and content.

  View details for DOI 10.1007/s00520-025-09238-7

  View details for PubMedID 39937313

  View details for PubMedCentralID PMC11821783

• Family-Level Impact of Germline Genetic Testing in Childhood Cancer: A Multi Family Member Interview Analysis. Cancers Van Hoyweghen, S., Claes, K. B., de Putter, R., Wakefield, C. E., Van Poucke, M., Van Schoors, M., Hellemans, S., Verhofstadt, L. 2025; 17 (3)

  Abstract

  Objectives: Germline genetic testing is increasingly being integrated into pediatric oncology and a large number of families are interested. Current research on the psychological impact of germline genetic testing is limited by a main focus on individual outcomes in parents or children and little is known about its impact at the family level. Our study addresses that limitation by exploring parents' lived experiences of how their family-as a whole-is affected by germline genetic testing for cancer predisposition. Methods: In six families who opted for germline genetic testing in the context of cancer predisposition, both parents of six ill children (five boys) with an average age of 9.67 years (SD = 3.77 years) were interviewed individually (N = 12). Germline genetic testing was performed by exome sequencing followed by analysis of a panel of childhood cancer predisposition genes in pediatric cancer patients and their parents. Their experiences were elicited through semi-structured interviews and the data were analyzed using Multi Family Member Interview Analysis. This qualitative study was conducted at Ghent University Hospital in Belgium. Results: The findings demonstrated that while germline genetic testing was generally viewed as a valuable and straightforward step in the child's oncology trajectory, parents found it difficult to distinguish its impact from the overwhelming stressors of their child's cancer diagnosis and treatment. However, parents recognized that the testing also significantly affected various family-level processes. Five main themes were identified: talking about germline genetic testing, being together matters (more), differences in coping with germline genetic testing between partners, feelings of guilt and mutual forgiveness, and concerns about the future health of the family. Conclusions: Given the expanded use of germline genetic testing in pediatric oncology, it is critical for clinicians to address the family-level impacts of germline genetic testing. Although families are affected by these issues, they often do not raise them due to the overwhelming challenges posed by the cancer diagnosis and treatment. Proactively addressing these themes could improve the support provided to families undergoing germline genetic testing for cancer predisposition.

  View details for DOI 10.3390/cancers17030517

  View details for PubMedID 39941887

  View details for PubMedCentralID PMC11816119

• A scoping review of participant reported outcome measures assessed during live and simulated surgical procedures. American journal of surgery Budden, A. K., Song, S., Henry, A., Wakefield, C. E., Abbott, J. A. 2025; 240: 116131

  Abstract

  The study aims to describe current use of participant-reported outcome measures (PROM) to assess stress in surgeons that may impact patient and surgeon wellbeing.Medline, Embase, Cochrane library, and clinical trial registries were searched. Articles reporting PROM of stress in live or simulated surgery were included.Of 10,160 articles screened, 67 were included in the review. PROM tools identified include task load index (TLX), State-Trait Anxiety Inventory (STAI), Dundee Stress State Questionnaire (DSSQ), and single question scales. PROM scores increased from baseline to procedure in single question scales and DSSQ. STAI increased by ​≥ ​1 point in 37-75 ​%. TLX scores were greater at laparoscopy vs robot, single incision laparoscopy and open surgery vs conventional laparoscopy. Residents showed higher mental demand than attendings. Music lowered TLX scores.Anxiety, stress, and workload have been measured in surgeons although the most appropriate to monitor surgeon wellbeing is not clear.

  View details for DOI 10.1016/j.amjsurg.2024.116131

  View details for PubMedID 39671970

• Are digital psychological interventions for psychological distress and quality of life in cancer patients effective? A systematic review and network meta-analysis. Clinical psychology review Zhang, T., Ren, Z., Wakefield, C. E., Hui, B. P., Akechi, T., Shi, C., Du, X., Chen, W., Lai, L., Zhao, C., Li, Y., Zhou, Y. 2025; 115: 102520

  Abstract

  Many cancer patients experience psychological distress and/or poor quality of life during or after their cancer treatment, yet they face multiple barriers to accessing psychological support. Digital psychological interventions represent a promising approach for addressing these barriers, however their comparative effectiveness remains uncertain.Nine databases were searched for randomized controlled trials (RCTs) from inception to July 2024. The primary outcomes were psychological distress and quality of life, and the secondary outcomes were measures of depression, anxiety, insomnia, fatigue, and fear of cancer recurrence in this study.One hundred and thirty-six RCTs with 23,154 participants were identified. Of these interventions, three types-digitally-delivered cognitive behavioral therapy (CBT), health education, and virtual reality therapy (VRT)-demonstrated significant reductions in psychological distress compared to non-active controls. Digital CBT, narrative interventions, and VRT significantly improved quality of life compared to non-active controls. For depression, both digital CBT and VRT were superior to the non-active control group. Regarding anxiety, CBT, psychoeducation, and VRT outperformed the non-active control group. In terms of fatigue, CBT, psychoeducation, VRT, and multi-component interventions all showed enhanced efficacy compared to the non-active control group. However, only CBT exhibited significantly superior effectiveness in alleviating insomnia compared to non-active controls. Similarly, only mindfulness-based interventions significantly reduced fear of cancer recurrence compared to the non-active control condition.Our results suggest that digital CBT and VRT are highly promising options for reducing psychological distress and enhancing the quality of life among cancer patients; further high-quality randomized controlled trials involving diverse populations are essential to validate these findings.

  View details for DOI 10.1016/j.cpr.2024.102520

  View details for PubMedID 39615074

• Delivering Trio Germline Whole Genome Sequencing to Patients Newly Diagnosed With Childhood Cancer: Healthcare Professionals' Perspectives of the PREDICT Study. Cancer medicine Hunter, J. D., Hetherington, K., Wakefield, C. E., Tucker, K. M., McGill, B. C., Grant, A., Fuentes-Bolanos, N. A., Padhye, B., Gleeson, M., Bhatia, K., Peate, M. 2025; 14 (4): e70680

  Abstract

  Germline genomic sequencing (GS) is increasingly offered to children with cancer. To optimize integration into routine care, assessment of implementation barriers and a better understanding of healthcare professionals' perspectives and experiences are needed.Healthcare professionals delivered trio germline GS to newly diagnosed pediatric and adolescent patients with cancer via the PREDICT completed questionnaires with qualitative and quantitative items. Each study site recorded reasons for eligible families' nonenrolment in PREDICT to identify barriers to recruitment. Quantitative data were analyzed via descriptive statistics, whereas qualitative data underwent inductive content analysis, with results integrated for interpretation.Thirty-three healthcare professionals participated, including 23 oncology professionals and 10 genetic professionals. Healthcare professionals perceived PREDICT as beneficial to participating and future families, and that perceptions of personal benefit and altruism were drivers of family uptake. Concerns included workforce capacity and potential family distress given the trio design and high-stress diagnosis setting. Barriers to recruitment related to clinical decision-making, family factors, and logistics. Although most rated their genetics/genomics knowledge as "good," regarding germline results, few were "very confident" interpreting (29%), explaining (32%), making treatment recommendations (9.7%), and providing psychosocial support to families (29%). They acknowledged a need for further training in these areas for trainees; yet, fewer were interested in training for themselves.Successful implementation of routine germline GS will require targeted strategies to address logistical issues and alleviate potential negative psychosocial impacts for families. Recognizing the escalating demand on genetics experts, upskilling of the current workforce and involvement of a broader spectrum of healthcare professionals are warranted.

  View details for DOI 10.1002/cam4.70680

  View details for PubMedID 39953756

  View details for PubMedCentralID PMC11829071

• Pilot testing "Teach Ted": A digital application for children undergoing blood tests and their parents. PEC innovation Signorelli, C., Kelada, L., Wakefield, C. E., Alchin, J. E., Adam, I., Hoffmann, P. 2024; 4: 100251

  Abstract

  In this pilot study, we evaluated the acceptability and preliminary evidence of the impact of a new educational mobile application, "Teach Ted", for children undergoing blood tests.Parents of children (4-10 years) completed questionnaires on anxiety and pain before their child had a blood test, and after using Teach Ted and receiving their blood test. Health professionals at each patient's blood test (e.g. technician/nurse) completed questionnaires on patient outcomes and procedure-related outcomes (e.g. time taken).Nine parents and eight health professionals participated. All but one parent (n = 8/9) reported Teach Ted was useful. Seventy-eight percent (n = 7/9) reported they would use Teach Ted again. All health professionals who completed the acceptability measure (n = 3/3) strongly agreed that Teach Ted was relevant/helpful. Many parents perceived Teach Ted helped reduce their/child's anxiety (n = 3/5, 60% and n = 4/6, 67% respectively), although child's pain and child's/parent's anxiety remained similar before and after using Teach Ted (all p > 0.05). The average blood test duration was 7.6 min (range ≤1 to 22), which health professionals (n = 3/3) reported was not elongated by offering Teach Ted.Participants reported that Teach Ted was acceptable. Further evaluation of Teach Ted's impact on patient's outcomes are needed.Teach Ted is an innovative mobile application with potential to educate young children about their upcoming procedure and mitigate negative outcomes.

  View details for DOI 10.1016/j.pecinn.2023.100251

  View details for PubMedID 38274175

  View details for PubMedCentralID PMC10808896

• Zero Childhood Cancer National Precision Medicine Program: Improving outcomes for children with high risk cancer cancer utilising comprehensive, integrated multiomic profiling Tyrrell, V., Mayoh, C., Ekert, P., Cowley, M., Ziegler, D., Wong, M., Barahona, P., Pinese, M., Haber, M., Salomon, R., Courtney, E., Lock, R., Fuentes-Bolanos, N., Marshall, G., Warby, M., Trahair, T., Dong Anh Khuong Quang, Wakefield, C., Tucker, K., Barlow-Stewart, K., Padhye, B., Lau, L. SPRINGERNATURE. 2024: 800

  View details for Web of Science ID 001421430500004

• Childhood Dementia Insight: A mixed-methods study investigating the psychosocial, quality of life, and psychological impacts of childhood dementia on families Nevin, S., Kelada, L., Wakefield, C., Hilton, G., Maack, M., Djafar, J., Elvidge, K., Farrar, M. SPRINGERNATURE. 2024: 1217

  View details for Web of Science ID 001421430501256

• Alignment of Palliative Care Service Structure and Standards of Care for Adolescents and Young Adults with Cancer: An International Survey of Clinical Practice. Journal of palliative medicine Sansom-Daly, U. M., Evans, H. E., Darlington, A. S., Weaver, M. S., Rosenberg, A. R., Wiener, L., Anazodo, A., Sue, L., Cable, M., Fernando, R. A., Herbert, A. R., Lindsay, T., Cohn, R. J., Wakefield, C. E. 2024; 27 (12): 1606-1617

  Abstract

  Background: Access to timely, age-appropriate palliative care services and end-of-life communication are two standards of care for adolescents and young adults (AYAs) living with cancer where cure is uncertain or unlikely. Health professionals' capacity to facilitate these standards is critical. This study aimed to understand AYA oncology health professionals' experienced practices in, and barriers to, delivering these standards of care across palliative care and end-of-life communication in Australia, New Zealand, and the United Kingdom (UK). Procedure: We invited health professionals to complete a survey examining access, barriers to, and practices around these standards of care. Tailored to local settings, our survey assessed current delivery of palliative care and end-of-life communication services (including advance care planning [ACP]) and barriers to implementation of these. Results: In total, 148 interdisciplinary health professionals participated (89% female overall; 83% female in Australia, 88% female in New Zealand, and 98% female in the UK). Across countries, participants reported that most institutions had an AYA cancer program (74% overall). Introduction to palliative care services was most often prognosis dependent or "not at any uniform time." ACP was less frequently introduced than palliative care. The most endorsed barrier to palliative care team introduction, as well as ACP, was "some team members not knowing how to introduce the topic." Conclusions: Our results indicate that there are common barriers to AYAs receiving palliative care, end-of-life communication, and ACP. Given that health professionals' confidence in this area can enable facilitation of early, age-appropriate communication, resources and training are urgently needed to bridge these practice gaps.

  View details for DOI 10.1089/jpm.2024.0141

  View details for PubMedID 39588678

  View details for PubMedCentralID PMC11698666

• Barriers to access of precision guided therapies for children with high-risk cancer. Pediatric blood & cancer Mazariego, C., Daly, R., McGill, B., Kelada, L., McKay, S., Hetherington, K., Ziegler, D. S., Wakefield, C. E., Taylor, N. 2024; 71 (11): e31147

  Abstract

  Accessing compassionate access schemes to obtain novel therapeutic agents for children with hard-to-treat cancers can be fraught with challenges such as regulatory barriers and limited resources. This study aimed to explore clinician perspectives on the barriers, impacts and ethical considerations of accessing novel therapeutic agents within the context of a paediatric oncology precision medicine trial.We gathered data from 37 semi-structured interviews with paediatric oncologists participating in the PRecISion Medicine for Children with Cancer (PRISM) study, a precision medicine clinical trial in Australia. The interviews, conducted over 2 years, focused on paediatric oncologist's experiences with the PRISM trial. Interviews were re-analysed to identify themes related to access pathways and any challenges in obtaining novel agents through thematic analysis. The resulting thematic framework was discussed and refined by a multidisciplinary team.Three main themes were identified: (i) barriers to access, including poor drug availability, lack of evidence and the time burden of the application process; (ii) impacts of inaccessibility, encompassing medical consequences and financial burden on families; and (iii) ethical considerations, centred around balancing realistic expectations and providing compassionate care to patients and families. Paediatric oncologists expressed frustration with the complex regulatory landscape and the lack of systematic reporting on applications and outcomes of obtaining novel agents. Lengthy wait times for decision notifications were also highlighted, raising concerns about missed therapeutic opportunities for patients.This study provides insight to the challenges faced when seeking access to novel therapies for paediatric oncology patients. There is a clear need for improved communication, streamlining processes and increased resources to facilitate access to novel agents. Further resource development is necessary to address these complexities in accessing novel therapy agents to ultimately ensure equitable and timely access.

  View details for DOI 10.1002/pbc.31147

  View details for PubMedID 39185694

• Surgeon stress, anxiety, and workload: a descriptive study of participant reported responses to fundamentals of laparoscopic surgery exercises. Surgical endoscopy Budden, A. K., Henry, A., Wakefield, C. E., Abbott, J. A. 2024; 38 (11): 6518-6526

  Abstract

  Stress while operating is an important contributor to surgeon health and burnout. Measuring stress is key to improving surgeon and patient outcomes, however biological responses to stress during surgery are variable and difficult to interpret. Participant reported measures of stress have been suggested as an alternative, but the most appropriate measure has not been defined. This study's primary aim was to assess measures of anxiety, stress, and workload before and after surgical simulation and characterize the relationship between these measures.Surgeons completed three laparoscopic exercises from the fundamentals of laparoscopy program (peg transfer, pattern cutting, intracorporeal suturing) in a neutral environment and "stressed" environment (ergonomic, noise, or time pressure). State trait anxiety and self-reported stress on a visual analogue scale were collected prior to simulation and again immediately afterwards. The NASA task load index (TLX) was also administered post-simulation.Of the 26 participants from gynecological and general surgery specialties, state anxiety increased in 98/148 simulations (62%) with a significant mean increase during simulation (32.9 ± 7.9 vs 39.4 ± 10.2, p < .001). Self-reported stress increased in 107/148 simulations (72%), with a significant increase in mean scores during simulation (38.7 ± 22.5 vs 48.9 ± 23.7, p < .001). NASA-TLX scores immediately after simulation ranged from 40 to 118 (mean 60.5 ± 28.7). Greater anxiety and stress scores were reported in "stressed" simulations (43.6 ± 23.1 vs 54.2 ± 23.3; 68.7 ± 27.0 vs 52.4 ± 28.2 respectively) with a significant interaction effect of the "stressed" environment and type of exercise. Anxiety and stress were moderately positively correlated prior to simulation (r = .40) and strongly positively correlated post-simulation (r = .70), however only stress was strongly correlated to workload (r = .79).Stress and anxiety varied by type of laparoscopic exercise and simulation environment. Correlations between anxiety and stress are stronger post-simulation than prior to simulation. Stress, but not anxiety, is highly correlated with workload.

  View details for DOI 10.1007/s00464-024-11238-3

  View details for PubMedID 39271514

  View details for PubMedCentralID PMC11525267

• Illness-related communication between siblings and parents of children with chronic illness and life-limiting conditions: A qualitative analysis. Palliative & supportive care Kelada, L., Jaaniste, T., Cuganesan, A., Chin, W. L., Caellainn Tan, S., Wu, J., Ilin, R., Robertson, E., Drew, D., Wakefield, C. E. 2024; 22 (5): 1353-1359

  Abstract

  Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent-sibling illness-related communication may contribute to siblings' capacity to cope.In this study, we aimed to explore parent-sibling illness-related communication, from the perspectives of parents and siblings. We also aimed to qualitatively compare participants' responses according to illness group (chronic illness vs. LLCs).We collected qualitative data from siblings (32 with a brother/sister with a chronic illness, 37 with a brother/sister with an LLC) and parents of a child with a chronic illness (n = 86) or LLC (n = 38) using purpose-designed, open-ended survey questions regarding illness-related communication. We used an inductive qualitative content analysis and matrix coding to explore themes and compare across illness groups.Two-thirds of siblings expressed satisfaction with their family's illness-related communication. Siblings typically reported satisfaction with communication when it was open and age-appropriate, and reported dissatisfaction when information was withheld or they felt overwhelmed with more information than they could manage. Parents generally favored an open communication style with the siblings, though this was more common among parents of children with an LLC than chronic illness.Our findings show that while many siblings shared that they felt satisfied with familial illness-related communication, parents should enquire with the siblings about their communication preferences in order to tailor illness-related information to the child's maturity level, distress, and age.

  View details for DOI 10.1017/S1478951524001056

  View details for PubMedID 39390958

• Online Ambassador Visits for Hospitalized Children With Cancer: Qualitative Evaluation of Implementation. JMIR pediatrics and parenting Boensvang, N. N., Weibel, M., Wakefield, C. E., Bidstrup, P. E., Olsen, M., Nissen, K. B., Spager, V., Fridh, M. K., Larsen, H. B. 2024; 7: e53309

  Abstract

  Children with cancer or cancer-like disease risk treatment-related isolation, which can negatively impact their peer relationships and social competencies and exacerbate their loneliness. During the COVID-19 pandemic, increased online socialization became the new normal imposed by national isolation guidelines. To adhere to the treatment-related isolation guidelines, children with cancer were offered online classmate "ambassador" visits during hospitalization.This study aimed to identify facilitators and barriers to online classmate "ambassador" visits during children with cancer's hospitalization through a qualitative descriptive process evaluation using the Consolidated Framework for Implementation Research.From January to April 2022, we conducted 39 individual semistructured interviews with hospitalized children (n=16), their classmates (n=16), teachers from their schools (n=3), and study nurses (n=4) from involved hospitals. Most interviews (n=37, 95%) were conducted online using Microsoft Teams or Google Meet, while 2 (5%) interviews were conducted in person at the participants' residences. This approach allowed us to gain a broad understanding of the facilitators and barriers to online ambassador visits.We identified four themes: (1) working together, (2) ensuring participation, (3) staying connected, and (4) together online. The themes are described in terms of facilitators and barriers to online ambassador visits with 3 Consolidated Framework for Implementation Research domains: innovation, individuals, and the implementation process.Addressing the social needs of hospitalized children through online visits with their classmates may be relevant when one-on-one meetings are problematic. The online visits are highly dependent on collaboration between study nurses and teachers and assessing the needs of the hospitalized children. While a high degree of adult engagement and a stable internet connection are pivotal, these online visits can promote much-needed social interaction between children across physical settings.

  View details for DOI 10.2196/53309

  View details for PubMedID 39231427

  View details for PubMedCentralID PMC11411222

• Quitting intentions and behaviours among young Australian e-cigarette users. Addiction (Abingdon, England) Jongenelis, M. I., Gill, M., Lawrence, N., Wakefield, C. E. 2024; 119 (9): 1608-1615

  Abstract

  With the prevalence of e-cigarette use among Australian youth increasing significantly in recent years, greater attention is being paid to encouraging and supporting cessation. However, research to inform such efforts is lacking. The present study sought to (i) measure desire to quit e-cigarette use and actual quitting attempts among young Australians and (ii) explore correlates of quitting-related cognitions and behaviours.This was a cross-sectional on-line survey conducted in Australia. The participants were 14-25-year-old e-cigarette users (n = 602; 53% women).Desire to quit vaping and attempts to quit vaping were the primary dependent variables. The independent variables included several individual (e.g. harm perceptions, perceived appeal of vapes), social (descriptive norms) and environmental (e.g. ease of e-cigarette access) factors.A majority of respondents (61%) expressed a desire to quit vaping, and just over half (55%) had made a quit attempt. Finding vapes easy to access was associated with both a lack of desire [odds ratio (OR) = 0.71] and attempts to quit (OR = 0.77), while self-reported addiction to vaping (OR = 1.42 and OR = 3.11) and perceiving vaping to be associated with mental health risks (OR = 1.30 and OR = 1.40) were positively correlated with these variables. Perceiving that vaping is common among people of one's age (OR = 0.82) and finding vapes appealing (OR = 0.55) were associated with a lack of desire to quit, while perceiving vaping to have physical health risks was positively associated with quitting desire (OR = 1.58). School-based education on vaping was associated with reporting an attempt/s to quit (OR = 0.47).This survey of young Australian e-cigarette users suggests a high level of desire to quit using e-cigarettes and attempts to quit. Increasing knowledge regarding the physical and mental health risks associated with e-cigarette use may assist with promoting quitting-related intentions. Changing social norms, reducing the accessibility of e-cigarettes and reducing the appeal of the products also constitute potential means of increasing the desire to quit.

  View details for DOI 10.1111/add.16530

  View details for PubMedID 38923180

• Sexual and reproductive complications and concerns of survivors of childhood, adolescent and adult cancer. Journal of cancer survivorship : research and practice Gerstl, B., Signorelli, C., Wakefield, C. E., Deans, R., Vaishnav, T., Johnston, K., Neville, K., Cohn, R. J., Anazodo, A. 2024; 18 (4): 1201-1210

  Abstract

  Cancer survivors may experience infertility and sexual dysfunction following cancer treatment. Survivors report significant gaps in oncofertility care and consider these issues important, yet they are rarely discussed. The aims of this study were to evaluate survivors' sexual and reproductive complications across age groups and to identify specific groups of survivors at risk for sexual and reproductive complications.We report data collected from survivors of cancers diagnosed in childhood, adolescence and adulthood following the development and piloting of a reproductive survivorship patient reported outcome measure (RS-PROM).One hundred and fifty survivors participated in the study (mean age at cancer diagnosis was 23.2 years [SD, 10.3 years]). About 68% of participants expressed concerns about their sexual health and function. Survivors (50%) expressed at least one body image concern, with the female gender the most common risk factor for all subgroups. A total of 36% of participants reported at least one concern regarding their fertility, with more male than female survivors reporting fertility preservation prior to treatment. Females compared with male participants were more likely to feel less physically attractive after treatment (OR = 3.83, 95% CI = 1.84-7.95, p < 0.001). More females than males were also more likely to feel dissatisfied with the appearance of a scar(s) after treatment (OR = 2.36, 95% CI = 1.13-4.91, p = 0.02).The RS-PROM identified multiple reproductive complications and concerns for cancer survivors in the survivorship period.Utilising the RS-PROM in conjunction with a clinic appointment could help identify and address cancer patients' concerns and symptoms.

  View details for DOI 10.1007/s11764-023-01349-6

  View details for PubMedID 36991269

  View details for PubMedCentralID PMC11324690

• When genetics and pediatric cancer collide: Understanding and optimizing families' experiences. Neuro-oncology advances Hetherington, K., Wakefield, C. E., McGill, B. C., Tucker, K. M., Donoghoe, M. W., Daly, R., Hunter, J. D., Ballinger, M., Fuentes-Bolanos, N. A., Ziegler, D. S. 2024; 6 (1): vdae133

  Abstract

  Advances in our understanding of the genetic basis of childhood cancer, including primary central nervous system cancers, are improving the diagnosis, treatment, and clinical management of pediatric patients. To effectively translate scientific breakthroughs into enhanced clinical care, it is essential we understand and learn from the experiences of patients, families, and health professionals.This report summarizes findings from 4 Australian psychosocial substudies exploring the perspectives of patients, parents, clinicians, and scientists participating in research related to childhood cancer genetics. Specifically, these studies focus on the psychosocial impact of germline testing in children, surveillance for children with a cancer predisposition syndrome and the perspectives of healthcare professionals who deliver this testing and surveillance.Data presented highlight some of the opportunities and challenges associated with the changing context of genetic predisposition testing for children, adolescents and yound adults with cancer and illustrate how embedding psychosocial data collection in clinical research can answer important questions in the field and inform the design of patient-centric models of care, resources, and workforce training.By embracing these perspectives, we can ensure that advances in genetic research translate into enhanced family experiences, and, ultimately, improved outcomes for children and young people with cancer, and their families.

  View details for DOI 10.1093/noajnl/vdae133

  View details for PubMedID 39220248

  View details for PubMedCentralID PMC11364933

• Comparing cancer genetic counselling using telegenetics with in-person and telephone appointments: Results of a partially randomised patient-preference pilot study. Journal of telemedicine and telecare Gonzalez, T., Tucker, K., Wakefield, C. E., Geelan-Small, P., Macmillan, S., Taylor, N., Williams, R. 2024; 30 (6): 949-960

  Abstract

  Direct-to-patient telegenetics, which uses video conferencing to connect health professionals directly to patients' devices, has been widely adopted during the pandemic. However, limited evidence currently supports its use in cancer genetic counselling.Before the pandemic, we conducted a two-arm partially randomised patient-preference pilot trial to evaluate direct-to-patient telegenetics for patients and genetic counsellors. Patients were randomised to a standard care (telephone/in-person) or direct-to-patient telegenetics appointment. Patients completed questionnaires before, during and after appointments measuring: psychological distress, perceived genetic counsellor empathy, telegenetics satisfaction and technical challenges. Genetic counsellor-reported outcomes -measured using purpose-designed questionnaires- included telegenetics satisfaction, therapeutic alliance and time for assessment. Open-ended patient and genetic counsellor questionnaire responses were synthesised using content analysis.Fifty-six patients and seven genetic counsellors participated. Thirteen patients switched appointment type. No significant differences in distress (P  =  0.84) were identified between direct-to-patient telegenetics and standard care. Perceived genetic counsellor empathy was high for all appointment types. There was no evidence of differences in reported maximum empathy scores between direct-to-patient telegenetics and standard care [telephone (P  =  0.57); in-person (P  =  0.44)]. Patients reported high direct-to-patient telegenetics satisfaction despite technical challenges in most appointments (65%). Genetic counsellors were satisfied with direct-to-patient telegenetics and perceived high therapeutic alliance irrespective of appointment type. No significant differences in genetic counsellor time were identified between direct-to-patient telegenetics and standard care [telephone (P > 0.90); in-person (P  =  0.35)].Our results suggest that direct-to-patient telegenetics is a satisfactory service delivery model that does not appear to compromise patient-genetic counsellor relationships or increase patient distress. These findings support direct-to-patient telegenetics use in cancer genetic counselling, although larger trials are needed.

  View details for DOI 10.1177/1357633X221112556

  View details for PubMedID 35833346

• Promise and Perils of Precision Oncology for Patients With Pediatric and Young Adult Sarcomas. American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting Church, A. J., Wakefield, C. E., Hetherington, K., Shern, J. F. 2024; 44 (3): e432794

  Abstract

  The completion of multiple national pediatric precision oncology platform trials and the incorporation of standardized molecular profiling into the diagnostic care of pediatric and young adult patients with sarcomas have proven the feasibility and potential of the approach. In this work, we explore the current state of the art of precision oncology for pediatric and young adults with sarcoma. We highlight important lessons learned and the challenges that should be addressed in the next generation of trials. The chapter outlines current efforts to improve standardization of molecular assays, harmonization of data collection, and novel molecular tools such as cell-free DNA analyses. Finally, we discuss the impacts and psychosocial outcomes experienced by patients and communication strategies for providers.

  View details for DOI 10.1200/EDBK_432794

  View details for PubMedID 38924707

• 'High hopes for treatment': Australian stakeholder perspectives of the clinical translation of advanced neurotherapeutics for rare neurological diseases. Health expectations : an international journal of public participation in health care and health policy Nguyen, C. Q., Kariyawasam, D. S., Ngai, T. S., Nguyen, J., Alba-Concepcion, K., Grattan, S. E., Palmer, E. E., Hetherington, K., Wakefield, C. E., Dale, R. C., Woolfenden, S., Mohammad, S., Farrar, M. A. 2024; 27 (3): e14063

  Abstract

  Advanced therapies offer unprecedented opportunities for treating rare neurological disorders (RNDs) in children. However, health literacy, perceptions and understanding of novel therapies need elucidation across the RND community. This study explored healthcare professionals' and carers' perspectives of advanced therapies in childhood-onset RNDs.In this mixed-methodology cross-sectional study, 20 healthcare professionals (clinicians, genetic counsellors and scientists) and 20 carers completed qualitative semistructured interviews and custom-designed surveys. Carers undertook validated psychosocial questionnaires. Thematic and quantitative data analysis followed.Participants described high positive interest in advanced therapies, but low knowledge of, and access to, reliable information. The substantial 'therapeutic gap' and 'therapeutic odyssey' common to RNDs were recognised in five key themes: (i) unmet need and urgency for access; (ii) seeking information; (iii) access, equity and sustainability; (iv) a multidisciplinary and integrated approach to care and support and (v) difficult decision-making. Participants were motivated to intensify RND clinical trial activity and access to advanced therapies; however, concerns around informed consent, first-in-human trials and clinical trial procedures were evident. There was high-risk tolerance despite substantial uncertainties and knowledge gaps. RNDs with high mortality, increased functional burdens and no alternative therapies were consistently prioritised for the development of advanced therapies. However, little consensus existed on prioritisation to treatment access.This study highlights the need to increase clinician and health system readiness for the clinical translation of advanced therapeutics for RNDs. Co-development and use of educational and psychosocial resources to support clinical decision-making, set therapeutic expectations and promotion of equitable, effective and safe delivery of advanced therapies are essential.Participant insights into the psychosocial burden and information need to enhance the delivery of care in this formative study are informing ongoing partnerships with families, including co-production and dissemination of psychoeducational resources featuring their voices hosted on the Sydney Children's Hospitals Network website SCHN Brain-Aid Resources.

  View details for DOI 10.1111/hex.14063

  View details for PubMedID 38711219

  View details for PubMedCentralID PMC11074375

• Communicating with families of young people with hard-to-treat cancers: Healthcare professionals' perspectives on challenges, skills, and training. Palliative & supportive care Kelada, L., Robertson, E. G., McKay, S., McGill, B. C., Daly, R., Mazariego, C., Taylor, N., Tyedmers, E., Armitage, N., Evans, H. E., Wakefield, C. E., Ziegler, D. S. 2024; 22 (3): 539-545

  Abstract

  Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs' key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training.We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with hard-to-treat cancer within the past 24 months. Interviews were analyzed using qualitative content analysis.We interviewed 10 oncologists, 7 nurses, and 3 social workers. HCPs identified several challenges for communication with families including: balancing information provision while maintaining realistic hope; managing their own uncertainty; and nurses and social workers being underutilized during conversations with families, despite widespread preferences for multidisciplinary teamwork. HCPs perceived that making themselves available to families, empowering them to ask questions, and repeating information helped to establish and maintain trusting relationships with families. Half the HCPs reported receiving no formal training for communicating prognosis and treatment options with families of children with hard-to-treat cancers. Nurses, social workers, and less experienced oncologists supported the development of communication training resources, more so than more experienced oncologists.Resources are needed which support HCPs to communicate with families of children with hard-to-treat cancers. Such resources may be particularly beneficial for junior oncologists and other HCPs during their training, and they should aim to prepare them for common challenges and foster greater multidisciplinary collaboration.

  View details for DOI 10.1017/S1478951523001992

  View details for PubMedID 38263685

• The feasibility and acceptability of collecting psychosocial outcome measures embedded within a precision medicine trial for childhood cancer. Cancer medicine Robertson, E. G., Hetherington, K., Daly, R., Donoghoe, M. W., Handelsman, N., Ziegler, D. S., Wakefield, C. E. 2024; 13 (12): e7339

  Abstract

  Patient-reported outcomes measures (PROMs) are increasingly being collected within cancer clinical trials, yet limited literature on the feasibility and acceptability of doing so.We collected parent-proxy and adolescent (≥12 years old) PROMs through a longitudinal, psychosocial sub-study ('PRISM-Impact') embedded in a precision medicine trial for children with poor prognosis cancer ('PRISM'). We report on feasibility (response, participation, and attrition rates; follow-up and responding to elevated distress) and acceptability (parents' perceived benefit/burden of participation; and impact on decision to participate in PRISM) of PRISM-Impact.Over the reporting period, 462 families were eligible for PRISM-Impact. Family and adolescent response rates were 53% and 45%, respectively. Parents whose child had relapsed were more likely to participate in PRISM-Impact than parents whose child had not (p < 0.001). Parent and adolescent attrition rates were 30% and 56% respectively. We conducted 478 calls for intake and to follow-up on missing questionnaires, and 122 calls to respond to elevated distress. Parents reported wanting to participate in PRISM-Impact for altruistic reasons and because they valued psychosocial research. Parents reported little-to-no burden and some benefit from participating in PRISM-Impact, with little change in ratings overtime. Most parents felt that participating in PRISM-Impact did not impact their desire to participate in PRISM (72%), with some feeling more eager to participate (19%).PRISM-Impact response rates were comparable to other psycho-oncology studies, despite the poor prognosis population. Integration of PROMs within a paediatric oncology trial is acceptable to parents, and may provide a more comprehensive assessment of the impact of trial participation.

  View details for DOI 10.1002/cam4.7339

  View details for PubMedID 38898768

  View details for PubMedCentralID PMC11187165

• Australian Headache Epidemiology Data (AHEAD): a pilot study to assess sampling and engagement methodology for a nationwide population-based survey. The journal of headache and pain Foster, E., Chen, Z., Wakefield, C. E., Ademi, Z., Hutton, E., Steiner, T. J., Zagami, A. S. 2024; 25 (1): 71

  Abstract

  There are no robust population-based Australian data on prevalence and attributed burden of migraine and medication-overuse headache (MOH) data. In this pilot cross-sectional study, we aimed to capture the participation rate, preferred response method, and acceptability of self-report questionnaires to inform the conduct of a future nationwide migraine/MOH epidemiological study.We developed a self-report questionnaire, available in hard-copy and online, including modules from the Headache-Attributed Restriction, Disability, Social Handicap and Impaired Participation (HARDSHIP) questionnaire, the Eq. 5D (quality of life), and enquiry into treatment gaps. Study invitations were mailed to 20,000 randomly selected households across Australia's two most populous states. The household member who most recently had a birthday and was aged ≥ 18 years was invited to participate, and could do so by returning a hard-copy questionnaire via reply-paid mail, or by entering responses directly into an online platform.The participation rate was 5.0% (N = 1,000). Participants' median age was 60 years (IQR 44-71 years), and 64.7% (n = 647) were female. Significantly more responses were received from areas with relatively older populations and middle-level socioeconomic status. Hard copy was the more commonly chosen response method (n = 736). Females and younger respondents were significantly more likely to respond online than via hard-copy.This pilot study indicates that alternative methodology is needed to achieve satisfactory engagement in a future nationwide migraine/MOH epidemiological study, for example through inclusion of migraine screening questions in well-resourced, interview-based national health surveys that are conducted regularly by government agencies. Meanwhile, additional future research directions include defining and addressing treatment gaps to improve migraine awareness, and minimise under-diagnosis and under-treatment.

  View details for DOI 10.1186/s10194-024-01773-8

  View details for PubMedID 38711023

  View details for PubMedCentralID PMC11075354

• It provides families with other avenues for treatment when there are no other options Surgeons' perspectives of being part of a precision medicine trial for poor prognosis paediatric cancer patients: A short report. Cancer medicine Daly, R., Hetherington, K., Wadling, B. R., Jacobs, C., Karpelowsky, J., Wakefield, C. E. 2024; 13 (9): e7209

  Abstract

  Precision medicine is transforming cancer treatment, yet the perspectives of surgeons who often play a critical role in the delivery of precision medicine remain understudied.We conducted semi-structured interviews with 13 surgeons involved in a precision medicine trial for children with poor prognosis cancer. We explored knowledge of genetics, confidence with somatic and germline results, ratings of benefit to stakeholders and willingness to undertake surgical procedures.Surgeons generally had positive attitudes towards precision medicine but expressed concerns about families' unrealistic expectations, mixed opinions on the benefits and the use of research-only biopsies. Most surgeons rated their genetics knowledge as 'good' (69%) and felt 'very confident' in identifying genetic specialists (66%), but 'not confident' (66.6%) in making treatment recommendations. Surgeons' willingness to undertake a procedure was influenced by potential patient benefit.Our findings support the need for more workforce and training support for surgeons to fully engage with precision medicine.

  View details for DOI 10.1002/cam4.7209

  View details for PubMedID 38716651

  View details for PubMedCentralID PMC11077424

• Neuroblastoma survivors' self-reported late effects, quality of life, health-care use, and risk perceptions. Palliative & supportive care Tan, J., McLoone, J. K., Wakefield, C. E., Nassar, N., Cohn, R. J., Signorelli, C. 2024; 22 (2): 296-305

  Abstract

  Survivors of childhood neuroblastoma are at risk of multiple treatment-related health problems (late effects), impacting their quality of life. While late effects and quality of life among Australia and New Zealand (ANZ) childhood cancer survivors have been reported, the outcomes of neuroblastoma survivors specifically have not been reported, limiting critical information to inform treatment and care.Young neuroblastoma survivors or their parents (as proxy for survivors <16 years) were invited to complete a survey and optional telephone interview. Survivors' late effects, risk perceptions, health-care use, and health-related quality of life were surveyed and analyzed using descriptive statistics and linear regression analyses. In-depth interviews explored participants' experiences, knowledge, and perception of late effects and information needs. Thematic content analysis was used to summarize the data.Thirty-nine neuroblastoma survivors or parents completed questionnaires (median age = 16 years, 39% male), with 13 also completing interviews. Thirty-two participants (82%) reported experiencing at least 1 late effect, most commonly dental problems (56%), vision/hearing problems (47%), and fatigue (44%). Participants reported high overall quality of life (index = 0.9, range = 0.2-1.0); however, more participants experienced anxiety/depression compared to the population norm (50% met criteria versus 25%, χ2 = 13, p < 0.001). Approximately half of participants (53%) believed they were at risk of developing further late effects. Qualitatively, participants reported knowledge gaps in understanding their risk of developing late effects.Many neuroblastoma survivors appear to experience late effects, anxiety/depression and have unmet cancer-related information needs. This study highlights important areas for intervention to reduce the impact of neuroblastoma and its treatment in childhood and young adulthood.

  View details for DOI 10.1017/S1478951523000615

  View details for PubMedID 37311662

• Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study. Journal of child health care : for professionals working with children in the hospital and community Robertson, E. G., Kelada, L., Ilin, R., Palmer, E. E., Bye, A., Jaffe, A., Kennedy, S. E., Ooi, C. Y., Drew, D., Wakefield, C. E. 2024: 13674935241238485

  Abstract

  Parents of a child with a chronic illness can experience greater distress than the average population, yet little is understood about differences between illness groups. This cross-sectional survey study aimed to compare parents' psychological distress and perceived wellbeing across five chronic illnesses. Parents from one Australian pediatric hospital completed the Kessler Psychological Distress Scale and seven purpose-designed items about their wellbeing. Data from 106 parents (cancer = 48, cystic fibrosis [CF] = 27, kidney disease = 12, gastrointestinal condition/disorder = 9, developmental and epileptic encephalopathy [DEE] = 10) was analysed using bivariate Pearson's Correlation and linear mixed-effects models. Parents' distress scores differed between groups (F(4,80) = 2.50, p = .049), with the DEE group reporting higher distress than the CF group (mean difference = 6.76, 95% CI [0.11, 13.42]). Distress scores were moderately correlated to parents' perceptions of their child's health and their own wellbeing. Parents' self-reported coping with their child's condition/treatments differed (F(4,81) = 3.24, p = .016), with the DEE group rating their coping as poorer than the CF group (mean difference = -25.32, 95% CI [-46.52, 4.11]). Across all groups, parents reported unmet needs, particularly for psychosocial support and practical/financial assistance. Support interventions may be most effective if tailored to the child's illness, with greater support potentially needed for parents who have a child with DEE and/or severe comorbidities.

  View details for DOI 10.1177/13674935241238485

  View details for PubMedID 38551845

• Co-design of a paediatric oncology medicines database (ProCure) to support complex care provision for children with a hard-to-treat cancer. Frontiers in medicine Mazariego, C. G., McKay, S., Tyedmers, E., Kelada, L., McGill, B. C., Daly, R., Wakefield, C. E., Ziegler, D. S., Taylor, N. 2024; 11: 1332434

  Abstract

  Paediatric oncologists often encounter challenges when seeking compassionate access to off-label therapies for their patients. This study employed implementation science and co-design techniques to develop the ProCure medicines database, with the goal of streamlining the application process and addressing identified barriers in paediatric oncology.This study utilised an exploratory qualitative research design. Seventeen healthcare providers, including oncologists, nurse consultants, and allied health professionals, participated in semi-structured interviews guided by the Consolidated Framework for Implementation Research (CFIR) and a visual process map aid. Deductive qualitative data analysis, according to the CFIR constructs, identified key barriers and facilitators. Collaborative design sessions engaged multidisciplinary teams to develop the ProCure beta version.Barriers to off-label therapy access included resource-intensive applications, time sensitive decision-making, and complex pharmaceutical information. Facilitators included Drug Access Navigators, Molecular Tumour Boards, and a multi-disciplinary approach. ProCure addressed end-user needs by centralising medicines information. Additional features suggested by healthcare providers included blood-brain-barrier penetrability data and successful application examples.ProCure represents a promising solution to the challenges paediatric oncologists face in accessing off-label therapies. By centralising information, it simplifies the application process, aids decision-making, and promotes a collaborative approach to patient care. The potential of the database to stream and enhance off-label therapy access underscores its relevance in improving paediatric oncology practise. Further research and implementation efforts are warranted to assess ProCure's real-world impact and refine its features based on user feedback.

  View details for DOI 10.3389/fmed.2024.1332434

  View details for PubMedID 38606155

  View details for PubMedCentralID PMC11007026

• Exploring childhood cancer survivor, parent, healthcare and community professionals' experiences of, and priorities for, using digital health to engage in physical activity: a mixed methods study. Journal of cancer survivorship : research and practice Ha, L., Nevin, S. M., Wakefield, C. E., Jacovou, J., Mizrahi, D., Signorelli, C. 2024

  Abstract

  Digital health interventions provide an innovative way to engage childhood cancer survivors in physical activity, yet few studies have explored the priorities of key stakeholders regarding using digital health. We aimed to investigate survivor, parent, and healthcare and community professional (HCP) experiences, priorities, and perceived importance of using digital health to promote physical activity behaviours for survivors.Participants rated the importance of digital health features to promote physical activity in a survey. Guided by survey responses, we facilitated online focus groups or semi-structured interviews to discuss participants' experiences, priorities, and suggestions in-depth. We transcribed the data verbatim and conducted directed content analysis.Forty participants took part in focus groups or interviews (including 9 childhood cancer survivors aged 8-21 years, 13 parents, and 18 HCP). Four key priorities were identified: health behaviour education, peer and parent involvement, goalsetting, and support from an HCP. There was a strong preference for digital mediums to facilitate physical activity due to its accessibility and convenience. Common intervention suggestions included earlier intervention (before the survivorship period), tailored and age-appropriate programs, a combined diet and exercise approach, and concise education delivery.This study identified key priorities that may help to promote physical activity behaviours among childhood cancer survivors. Further research is needed to integrate these priorities into health behaviour interventions and evaluate their feasibility and efficacy.Incorporating these multi-perspective priorities into future interventions will help to ensure their sustainability, acceptability, and uptake. This will in turn support childhood cancer survivors to develop a healthy lifestyle into adulthood.

  View details for DOI 10.1007/s11764-024-01560-z

  View details for PubMedID 38478196

  View details for PubMedCentralID 9238650

• The lived experience of people affected by cancer: A global cross-sectional survey protocol. PloS one Cayrol, J., Wakefield, C. E., Ilbawi, A., Donoghoe, M., Hoffman, R., Echodu, M., Schilstra, C., Ortiz, R., Wiener, L. 2024; 19 (2): e0294492

  Abstract

  A diagnosis of cancer impacts the person's physical and mental health and the psychosocial and financial health of their caregivers. While data on the experience of living with cancer is available, there is a dearth of data from persons in low- and middle-income countries (LMICs). The perspectives of other impacted individuals also remain understudied (e.g., bereaved family members), as well as the impact on survivors and their families over time. The objective of this study is to describe the psychosocial and financial impact of cancer on people diagnosed with cancer as a child, adolescent or adult, their families/caregivers, and the family members of those who have died from cancer, in high-income countries (HICs) and LMICs. This study is an observational, descriptive, quantitative study. Data will be collected anonymously via a digital online cross-sectional survey distributed globally by the World Health Organization (WHO) via the LimeSurvey software. Participants will include (a) adults aged 18+ who have been diagnosed with cancer at any age, who are currently undergoing cancer treatment or who have completed cancer treatment; (b) adult family members of individuals of any age with a cancer diagnosis, who are currently undergoing cancer treatment or who have completed cancer treatment; and (c) bereaved family members. Participants will be anonymously recruited via convenience and snowball sampling through networks of organisations related to cancer. Survey results will be analysed quantitatively per respondent group, per time from diagnosis, per disease and country. Results will be disseminated in peer-reviewed journals and at scientific conferences; a summary of results will be available on the WHO website. This study will suggest public health interventions and policy responses to support people affected by cancer and may also lead to subsequent research focusing on the needs of people affected by cancer.

  View details for DOI 10.1371/journal.pone.0294492

  View details for PubMedID 38394101

  View details for PubMedCentralID PMC10889872

• Surgeon reported measures of stress and anxiety prior to and after elective gynecological surgery. Acta obstetricia et gynecologica Scandinavica Budden, A. K., Song, S., Henry, A., Wakefield, C. E., Abbott, J. A. 2024; 103 (2): 360-367

  Abstract

  Performing surgical procedures is a recognized source of stress for surgeons. Vocational stress is an important contributor to performance, patient care, and burnout with dispositional and environmental factors contributing. Accurately assessing surgeon stress is critical to measuring effectiveness of stress reduction programs. The primary aim was to identify differences between surgeons' self-reported anticipated stress and anxiety prior to gynecological surgery, compared with their recollection of experienced stress and anxiety during surgery. Secondary aims assessed any differences by level of training, surgical type, and surgeon role.Attending and resident gynecologists performing routine elective surgeries completed a visual analog scale (VAS) assessing perceived stress and the State-Trait Anxiety Inventory (STAI) prior to and immediately after completing 161 elective surgeries including total laparoscopic hysterectomy, laparoscopic excision of moderate-severe endometriosis, or hysteroscopic myomectomy.Eight attending gynecologists and nine residents participated. Residents commenced as primary surgeon in 62/90 (69%) procedures. Stress experienced during surgery was greater than anticipated in 92/161 (57%) surgery episodes (mean VAS increase: 3.9; 95% CI: 1.1-6.8, p = 0.009). State anxiety was greater than anticipated in 99/161 (62%) episodes (mean state anxiety increase: 4.4; 95% CI: 3.0-5.8, p < 0.001). Greater preprocedural anticipatory stress and anxiety was observed in residents vs. attending gynecologists (VAS 51.9 vs. 22.8, p < 0.001; state anxiety 38.3 vs. 28.1, p < 0.001) and in primary vs. assistant surgeons (VAS 47.2 vs. 29.9, p < 0.001; state anxiety 36.9 vs. 28.3, p < 0.001). Intraoperative stress and anxiety were greater in primary surgeons (VAS 50.4 vs. 30.5, p < 0.001; anxiety 41.3 vs. 32.5, p < 0.001) and residents (VAS 43.4 vs. 31.7, p < 0.001; anxiety 53.5 vs. 33.7, p < 0.001) compared with assistants and attending gynecologists. Perceived stress and anxiety were positively correlated at both timepoints (r = 0.68, p < 0.001; r = 0.82, p < 0.001).When asked to reflect on stress experienced during surgery, our data show that stress during surgery is greater than anticipated for many surgical episodes. Self-reported stress symptoms commence prior to surgery and are more commonly reported by surgeons operating as primary surgeon and by those in training. Future research should focus on determinants of presurgical stress and examine when stressors become inhibitory to performance.

  View details for DOI 10.1111/aogs.14728

  View details for PubMedID 38053225

  View details for PubMedCentralID PMC10823402

• Causation in cerebral palsy: Parental beliefs and associated emotions. Developmental medicine and child neurology Smyth, R., Reid, S. M., Paton, K., Guzys, A. T., Wakefield, C. E., Amor, D. J. 2024; 66 (2): 258-266

  Abstract

  To better understand parents' beliefs about causation in cerebral palsy (CP) and the emotions related to those beliefs.We surveyed 226 parents of children with CP aged 1 to 18 years, recruited from the Victorian Cerebral Palsy Register, to evaluate their beliefs about the causes of CP, including genetic causes, causes specific to their own child, and their attitudes and emotions in relation to these.Although 92% of participants reported that understanding the causes of their child's CP was important, uncertainty about the cause was expressed by 13%. The most frequently endorsed causal factors, in general and in their own child respectively, were intrapartum hypoxia (81%, 36%) or brain damage (69%, 22%), brain damage during pregnancy (73%, 28%), and preterm birth (66%, 28%). Genetic causes were deemed relevant by 13% of participants and hospital or professional error by 16%. Parents shared related feelings of anger (59%), sadness (80%), guilt (61%), and confusion (53%); parental anger was more likely when their child's CP was attributed to intrapartum events.Substantial parental interest in understanding the causes of CP, together with uncertainty about the causes, parents' causal attributions, and significant emotional sequelae, highlight a strong need for provision of information and support for families of children recently diagnosed with CP.Understanding the causes of their child's cerebral palsy (CP) was important to parents. Parents most often endorsed intrapartum factors as a cause of CP. Parents reported experiencing strong emotions about the causes of their child's CP.

  View details for DOI 10.1111/dmcn.15708

  View details for PubMedID 37415350

  View details for PubMedCentralID PMC10953392

• Guidelines for Caring for the Social Well-Being of Adolescents and Young Adults with Cancer in Australia. Journal of adolescent and young adult oncology Schilstra, C. E., Sansom-Daly, U. M., Ellis, S. J., Trahair, T. N., Anazodo, A. C., Amiruddin, A., Lindsay, T., Maguire, F., Wakefield, C. E., Lah, S., Bland, E., Lenthen, K., Rifkin, A., Awan, A., Kittos, T., Hanbury, N., Tsalidis, S., Patterson, P., McDonald, F., Fardell, J. E. 2024; 13 (1): 8-29

  Abstract

  More than 1000 Australian adolescents and young adults (AYAs) are diagnosed with cancer annually. Many report unmet social well-being needs, which impact their mental health. Australian AYA cancer care providers lack guidance to address these needs well. We aimed to develop guidelines for caring for the social well-being of AYAs with cancer in Australia. Following the Australian National Health and Medical Research Council guidance, we formed a multidisciplinary working group (n = 4 psychosocial researchers, n = 4 psychologists, n = 4 AYA cancer survivors, n = 2 oncologists, n = 2 nurses, and n = 2 social workers), defined the scope of the guidelines, gathered evidence via a systematic review, graded the evidence, and surveyed AYA cancer care providers about the feasibility and acceptability of the guidelines. The guidelines recommend which AYAs should have their social well-being assessed, who should lead that assessment, when assessment should occur with which tools/measures, and how clinicians can address AYAs' social well-being concerns. A key clinician, who is knowledgeable about AYAs' developmental needs, should lead the assessment of social well-being during and after cancer treatment. The AYA Psycho-Oncology Screening Tool is recommended to screen for social well-being needs. The HEADSSS Assessment (Home, Education/Employment, Eating/Exercise, Activities/Peer Relationships, Drug use, Sexuality, Suicidality/Depression, Safety/Spirituality Assessment) can be used for in-depth assessment of social well-being, while the Social Phobia Inventory can be used to assess social anxiety. AYA cancer care providers rated the guidelines as highly acceptable, but discussed many feasibility barriers. These guidelines provide an optimal care pathway for the social well-being of AYAs with cancer. Future research addressing implementation is critical to meet AYAs' social well-being needs.

  View details for DOI 10.1089/jayao.2023.0027

  View details for PubMedID 37367208

• "It just never ends": Childhood cancer survivors' perceived psychosocial impacts of recurrence and second cancer. Palliative & supportive care Lee, A. E., McLoone, J. K., Touyz, L. M., Wakefield, C. E., Cohn, R. J., Signorelli, C. 2024; 22 (1): 31-40

  Abstract

  Childhood cancer survivors are at risk of developing primary recurrences and new second cancers. Experiencing a recurrence and/or second cancer can be highly distressing for survivors and families. We aimed to understand the psychological impacts of experiencing a recurrence or second cancer and how this potentially influences survivors' engagement with survivorship care.We invited childhood cancer survivors or their parents if survivors were ≤16 years of age from 11 tertiary pediatric oncology hospitals across Australia and New Zealand to complete interviews. We conducted a thematic analysis facilitated by NVivo12.We interviewed 21 participants of whom 16 had experienced a recurrence, 3 had a second cancer, and 2 had both a recurrence and second cancer. Participants reported that a recurrence/second cancer was a stressful sudden disruption to life, accompanied by strong feelings of uncertainty. Participants tended to be less aware of their second cancer risk than recurrence risk. Some participants reported feelings of anxiousness and despair, describing varying responses such as gratitude or avoidance. Participants shared that the fear of cancer recurrence either motivated them to adopt protective health behaviors or to avoid information and disengage from survivorship care.Some survivors and their parents have a poor understanding and expressed reluctance to receive information about their risk of second cancer and other treatment-related late effects. Improving the delivery of information about late effects to families may improve their engagement with survivorship care and surveillance, although care must be taken to balance information provision and survivors' anxieties about their future health.

  View details for DOI 10.1017/S1478951522001328

  View details for PubMedID 36164937

• The psychological impact of genetic testing in childhood cancer: A systematic review. Psycho-oncology Van Hoyweghen, S., Bm Claes, K., de Putter, R., Wakefield, C., Van Schoors, M., Hellemans, S., Verhofstadt, L. 2024; 33 (1): e6279

  Abstract

  Cancer predisposition syndromes are being more frequently recognized in the etiology of pediatric oncology and genetic-related technologies are evolving rapidly, leading to an increasing availability of genetic testing for families. This systematic review assessed the psychological impact of genetic testing on children and parents in the context of childhood cancer.Searches were performed using three databases (Web of Science, Pubmed and Embase) to identify relevant empirical studies. Following Cochrane guidelines, we screened 3838 articles and identified 18 eligible studies, representing the perspectives of children and/or parents.The included studies described the impact of genetic testing in different contexts (e.g. predictive testing and diagnostic testing) and in different subgroups, (e.g. carriers and non-carriers). Overall, the studies did not identify clinically-relevant long-term increases in negative emotions (depression, anxiety, distress, uncertainty, guilt) as a result of genetic testing. Negative emotions were typically time-limited and generally occurred in families with particular characteristics (e.g. those with a history of multiple cancer diagnoses, families receiving an unfavorable result for one child and a favorable result in siblings, and those with pre-existing mental health difficulties). Positive emotions (hopefulness, relief and peace of mind) were also reported. Knowing their genetic risk status appeared to help to foster empowerment among families, regardless of the result and any associated emotions.Genetic testing in pediatric oncology does not appear to cause significant additional harm and can lead to positive outcomes. Clinicians need to be especially attentive when counseling families at increased risk of distress.

  View details for DOI 10.1002/pon.6279

  View details for PubMedID 38282231

• Gastroenterology services for patients with Cystic Fibrosis across Australia and New Zealand: a multi-stakeholder assessment of patients' and professionals' perspectives. Frontiers in pediatrics Katz, T. E., Wakefield, C. E., Signorelli, C., Day, A. S., Vernon-Roberts, A., Ooi, C. Y. 2023; 11: 1322941

  Abstract

  Gastrointestinal (GI) symptoms are common in individuals with Cystic Fibrosis (CF). International research has highlighted that GI care for this group of patients is lacking. Gastroenterology services to CF clinics across Australasia are yet to be examined. This study aimed to describe the current service delivery model and identify areas for improvement that may lead to positive patient outcomes.CF clinicians (dietitians, clinical nurse consultants, respiratory consultants), gastroenterologists (GE), and patients or their carers from Australia and New Zealand (NZ) were surveyed online to gather their opinions on CF gastroenterology services provided in their region. Data were analysed using descriptive statistics (frequencies and percentages). Likert scale questions were analysed by grouping responses 1-5 and 6-10, presented alongside the median and interquartile range (IQR). Mann-Whitney U and chi-square tests were used to look at differences between stakeholder groups.One hundred and fifty-six health professionals and 172 patients or their carers completed the survey. Results showed that the current GI model of care is predominantly a publicly funded service delivered outside of CF clinic time. GE are largely not integrated into the CF team and report a lack of training opportunities. There is a higher level of dissatisfaction with the current service model in NZ than Australia.No stakeholder group deemed the current CF gastroenterology service model as adequate, leaving opportunity for transformations in this field. Ideally this study will invigorate the need for promotion and integration of GI services that would ultimately benefit the whole CF community.

  View details for DOI 10.3389/fped.2023.1322941

  View details for PubMedID 38161436

  View details for PubMedCentralID PMC10755025

• Relationship between survivorship care plans and unmet information needs, quality of life, satisfaction with care, and propensity to engage with, and attend, follow-up care. Cancer Hill, R. E., Mercieca-Bebber, R., Fardell, J. E., Wakefield, C. E., Signorelli, C., Webber, K., Cohn, R. J. 2023; 129 (23): 3820-3832

  Abstract

  The impact of survivorship care plans (SCPs) on the proximal and distal outcomes of adult and childhood cancer survivors, and parent proxies, is unclear. This study aimed to determine the relationship between SCP receipt and these outcomes.A cross-sectional survey of adult and childhood cancer survivors (and parent proxies for survivors aged younger than 16 years) across Australia and New Zealand was conducted. Multivariate regression models were fitted to measure the impact of SCP receipt on proximal (unmet information needs and propensity to engage with, and attend, cancer-related follow-up care) and distal outcomes (quality of life and satisfaction with cancer-related follow-up care) with control for cancer history and sociodemographic factors.Of 1123 respondents, 499 were adult cancer survivors and 624 were childhood cancer survivors (including 222 parent proxies). We found that SCP receipt was predictive of greater attendance at, and awareness of, cancer-related follow-up care (adult: odds ratio [OR], 2.46; 95% CI, 1.18-5.12; OR, 2.38; 95% CI, 1.07-5.29; child/parent: OR, 2.61; 95% CI, 1.63-4.17; OR, 1.63; 95% CI, 1.06-2.50; respectively). SCP receipt also predicted fewer unmet information needs related to "follow-up care required" and "possible late effects" (adult: OR, 0.44; 95% CI, 0.20-0.96; OR, 0.29; 95% CI, 0.13-0.64; child/parent: OR, 0.46; 95% CI, 0.30-0.72; OR, 0.57; 95% CI, 0.38-0.85; respectively). In terms of distal outcomes, SCP receipt predicted a better global quality of life for adult cancer survivors (β, 0.08; 95% CI, -0.01-7.93), proxy-reported health-related quality of life (β, 0.15; 95% CI, 0.44-7.12), and satisfaction with follow-up care for childhood cancer survivors (OR, 2.93; 95% CI, 1.64-5.23).Previous studies have shown little impact of SCPs on distal end points. Results suggest that SCPs may be beneficial to cancer survivors' proximal and distal outcomes.

  View details for DOI 10.1002/cncr.34984

  View details for PubMedID 37566341

  View details for PubMedCentralID PMC10952368

• Parents' expectations, preferences, and recall of germline findings in a childhood cancer precision medicine trial. Cancer McGill, B. C., Wakefield, C. E., Tucker, K. M., Daly, R. A., Donoghoe, M. W., Vetsch, J., Warby, M., Fuentes-Bolanos, N. A., Barlow-Stewart, K., Kirk, J., Courtney, E., O'Brien, T. A., Marshall, G. M., Pinese, M., Cowley, M. J., Tyrrell, V., Deyell, R. J., Ziegler, D. S., Hetherington, K. 2023; 129 (22): 3620-3632

  Abstract

  Germline genome sequencing in childhood cancer precision medicine trials may reveal pathogenic or likely pathogenic variants in cancer predisposition genes in more than 10% of children. These findings can have implications for diagnosis, treatment, and the child's and family's future cancer risk. Understanding parents' perspectives of germline genome sequencing is critical to successful clinical implementation.A total of 182 parents of 144 children (<18 years of age) with poor-prognosis cancers enrolled in the Precision Medicine for Children with Cancer trial completed a questionnaire at enrollment and after the return of their child's results, including clinically relevant germline findings (received by 13% of parents). Parents' expectations of germline genome sequencing, return of results preferences, and recall of results received were assessed. Forty-five parents (of 43 children) were interviewed in depth.At trial enrollment, most parents (63%) believed it was at least "somewhat likely" that their child would receive a clinically relevant germline finding. Almost all expressed a preference to receive a broad range of germline genomic findings, including variants of uncertain significance (88%). Some (29%) inaccurately recalled receiving a clinically relevant germline finding. Qualitatively, parents expressed confusion and uncertainty after the return of their child's genome sequencing results by their child's clinician.Many parents of children with poor-prognosis childhood cancer enrolled in a precision medicine trial expect their child may have an underlying cancer predisposition syndrome. They wish to receive a wide scope of information from germline genome sequencing but may feel confused by the reporting of trial results.

  View details for DOI 10.1002/cncr.34917

  View details for PubMedID 37382186

  View details for PubMedCentralID PMC10952780

• Parents' and adolescents' perspectives and understanding of information about childhood cancer precision medicine. Cancer Gereis, J. M., Hetherington, K., Robertson, E. G., Daly, R., Donoghoe, M. W., Ziegler, D. S., Marshall, G. M., Lau, L. M., Marron, J. M., Wakefield, C. E. 2023; 129 (22): 3645-3655

  Abstract

  Precision medicine is projected to become integral to childhood cancer care. As such, it is essential to support families to understand what precision medicine entails.A total of 182 parents and 23 adolescent patients participating in Precision Medicine for Children with Cancer (PRISM), an Australian precision medicine clinical trial for high-risk childhood cancer, completed questionnaires after study enrollment (time 0 [T0]). Of the parents, 108 completed a questionnaire and 45 completed an interview following return of precision medicine results (time 1 [T1]). We analyzed the mixed-methods data comprising measures exploring families' perceptions and understanding of PRISM's participant information sheet and consent form (PISCF), and factors associated with understanding.Most parents were satisfied with the PISCF, rating it as at least "somewhat" clearly presented (n = 160/175; 91%) and informative (n = 158/175; 90%). Many suggested improvements including the use of clearer language and a more visually engaging format. Parents' actual understanding of precision medicine was low on average, but scores improved between T0 and T1 (55.8/100-60.0/100; p = .012). Parents from culturally and/or linguistically diverse backgrounds (n = 42/177; 25%) had lower actual understanding scores than those from a Western/European background whose first language was English (p = .010). There was little correlation between parents' perceived and actual understanding scores (p = .794; Pearson correlation -0.020; 95% CI, -0.169 to 0.116). Most adolescent patients read the PISCF either "briefly" or "not at all" (70%) and had a perceived understanding score of 63.6/100 on average.Our study revealed gaps in families' understanding of childhood cancer precision medicine. We highlighted areas for potential intervention such as through targeted information resources.Precision medicine is projected to become part of the standard of care for children with cancer. Precision medicine aims to give the right treatment to the right patient and involves several complex techniques, many of which may be challenging to understand. Our study analyzed questionnaire and interview data from parents and adolescent patients enrolled in an Australian precision medicine trial. Findings revealed gaps in families' understanding of childhood cancer precision medicine. Drawing on parents' suggestions and the literature, we make brief recommendations about improving information provision to families, such as through targeted information resources.

  View details for DOI 10.1002/cncr.34914

  View details for PubMedID 37376781

• Hopes, concerns, satisfaction and regret in a precision medicine trial for childhood cancer: a mixed-methods study of parent and patient perspectives. British journal of cancer Wakefield, C. E., Hetherington, K., Robertson, E. G., Donoghoe, M. W., Hunter, J. D., Vetsch, J., Marron, J. M., Tucker, K. M., Marshall, G. M., Broom, A., Haber, M., Tyrrell, V., Malkin, D., Lau, L., Mateos, M. K., O'Brien, T. A., Ziegler, D. S. 2023; 129 (10): 1634-1644

  Abstract

  Paediatric precision oncology aims to match therapeutic agents to driver gene targets. We investigated whether parents and patients regret participation in precision medicine trials, particularly when their hopes are unfulfilled.Parents and adolescent patients completed questionnaires at trial enrolment (T0) and after receiving results (T1). Parents opted-in to an interview at T1. Bereaved parents completed a questionnaire 6-months post-bereavement (T1B). We analysed quantitative data with R and qualitative data thematically with NVivo, before integrating all data for interpretation.182 parents and 23 patients completed T0; 108/182 parents and 8/23 patients completed T1; 27/98 bereaved parents completed T1B; and 45/108 parents were interviewed. At enrolment, participants held concurrent hopes that precision medicine would benefit future children and their child. Participants expressed concern regarding wait-times for receipt of results. Most participants found the trial beneficial and not burdensome, including bereaved parents. Participants reported high trial satisfaction (median scores: parents: 93/100; patients: 80/100). Participants expressed few regrets (parent median scores: parents: 10/100; bereaved parents: 15/100; patient regret: 2/8 expressed minimal regret).Even when trial outcomes did not match their hopes, parents and patients rarely regretted participating in a childhood cancer precision medicine trial. These data are critical for integrating participants' views into future precision medicine delivery.

  View details for DOI 10.1038/s41416-023-02429-1

  View details for PubMedID 37726477

  View details for PubMedCentralID PMC10645918

• Patterns of physical activity and sedentary behavior in child and adolescent cancer survivors assessed using wrist accelerometry: A cluster analysis approach. Health informatics journal Ha, L., Wakefield, C. E., Diaz, C., Mizrahi, D., Signorelli, C., Yacef, K., Simar, D. 2023; 29 (4): 14604582231212525

  Abstract

  Physical activity levels among childhood cancer survivors are typically quantified as a total amount using time spent in various intensities. Yet, most analyses do not consider the transitory nature of children's behaviors and a more detailed approach could provide complimentary information. We aimed to explore various behavior profiles of survivors' daily and hourly physical activity patterns. We measured 8-18-year-old survivors' activity levels over 7 days using wrist accelerometry and cluster analysis. Of the 37 participant datasets, survivors engaged in mean (SD) 36.3 (19.0) min/day of MVPA and 4.1 (1.9) hrs/day of sedentary activity. The cluster analysis revealed five daily movement patterns: 'most active' (prevalence 11%), 'active' (22%), 'moderately active + moderately sedentary' (35%), 'moderately active + high sedentary' (5%) and 'least active' (27%). Younger survivors and those with less time since treatment completion were more likely to be in the active clusters. Hourly behaviors were characterized by short bursts of MVPA and moderate bouts of sedentary activity. Our approach provides an insightful analysis into the nature and timing of childhood cancer survivors' movement behaviours. Our findings may assist in the development of targeted interventions to improve physical activity levels.

  View details for DOI 10.1177/14604582231212525

  View details for PubMedID 37903362

• Impact of Hospitalizations due to Chronic Health Conditions on Early Child Development. Journal of pediatric psychology Fardell, J. E., Hu, N., Wakefield, C. E., Marshall, G., Bell, J., Lingam, R., Nassar, N. 2023; 48 (10): 799-811

  Abstract

  To assess the impact of hospitalization for chronic health conditions on early child development and wellbeing at school start.We conducted a longitudinal cohort study of children starting school using population-based record linkage of routinely collected admitted hospital data and standardized assessment of early childhood development (Australian Early Developmental Census: AEDC). Developmental vulnerability (DV) was defined as children scoring <10th centile in any one of five developmental domains. Children scoring <10th centile on two or more domains were considered developmentally high-risk (DHR). Children hospitalized with chronic health conditions were compared to children without hospitalizations prior to school start.Among 152,851 children with an AEDC record, 22,271 (14·6%) were hospitalized with a chronic condition. Children hospitalized with chronic health conditions were more likely to be DHR (adjusted odds ratio 1.25, 95% CI: 1.18-1.31) compared to children without hospitalizations. Children hospitalized more frequently (>7 times) or with longer duration (>2 weeks) had a 40% increased risk of being DHR (1.40, 95% CI: 1.05-1.88 and 1.40, 95% CI: 1.13-1.74, respectively). Children hospitalized with mental health/behavioral/developmental conditions had the highest risk of DHR (2.23, 95% CI: 1.72-2.90). Developmental vulnerability was increased for physical health (1.37, 95% CI: 1.30-1.45), language (1.28, 95% CI: 1.19-1.38), social competence (1.22, 95% CI: 1.16-1.29), communication (1.17, 95% CI: 1.10-1.23), and emotional maturity (1.16, 95% CI: 1.09-1.23).Frequent and longer duration hospitalizations for chronic health conditions can impact early childhood development. Research and interventions are required to support future development and well-being of children with chronic health conditions who are hospitalized.

  View details for DOI 10.1093/jpepsy/jsad025

  View details for PubMedID 37105227

• Acute Biological Changes in Gynecologic Surgeons during Surgery: A Prospective Study. Journal of minimally invasive gynecology Budden, A. K., Song, S., Henry, A., Nesbitt-Hawes, E., Wakefield, C. E., Abbott, J. A. 2023; 30 (10): 841-849

  Abstract

  To assess changes in biological measures of acute stress in surgeons during surgery in real-world settings DESIGN: A prospective cohort study.A tertiary teaching hospital.8 consultant and 9 training gynecologists.A total of, 161 elective gynecologic surgeries of 3 procedures: laparoscopic hysterectomy, laparoscopic excision of endometriosis, or hysteroscopic myomectomy.Changes in surgeons' biological measures of acute stress while undertaking elective surgery. Salivary cortisol, mean and maximum heart rate (HR), and indices of the HR variability were recorded before and during surgery. From baseline to during surgery over the cohort, salivary cortisol decreased from 4.1 nmol/L to 3.6 nmol/L (p = .03), maximum HR increased from 101.8 beats per min (bpm) to 106.5 bpm (p <.01), root mean square of standard deviation decreased from 51.1 ms to 39.0 ms (p <.01), and standard deviation of beat-to-beat variability decreased from 73.7 to 59.8 ms (p <.01). Analysis of individual changes in stress by participant-surgery event by paired data graphs reveal inconsistent direction of change in all measures of biological stress despite stratification by surgical experience, role in surgery, level of training, or type of surgery performed.This study measured biometric stress changes at both a group and individual level in real-world, live surgical settings. Individual changes have not previously been reported and the variable direction of stress change by participant-surgery episode identified in this study demonstrates a problematic interpretation of mean cohort findings previously reported. Results from this study suggest that either live surgery with tight environment control or surgical simulation studies may identify what, if any, biological measures of stress can predict acute stress reactions during surgery.

  View details for DOI 10.1016/j.jmig.2023.06.014

  View details for PubMedID 37379897

• The psychosocial impact of childhood dementia on children and their parents: a systematic review. Orphanet journal of rare diseases Nevin, S. M., McGill, B. C., Kelada, L., Hilton, G., Maack, M., Elvidge, K. L., Farrar, M. A., Baynam, G., Katz, N. T., Donovan, L., Grattan, S., Signorelli, C., Bhattacharya, K., Nunn, K., Wakefield, C. E. 2023; 18 (1): 277

  Abstract

  Childhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis. There are significant knowledge and clinician skill gaps regarding the shared psychosocial impacts of childhood dementia conditions. This systematic review integrates the existing international evidence of the collective psychosocial experiences of parents of children living with dementia.We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched four databases to identify original, peer-reviewed research reporting on the psychosocial impacts of childhood dementia, from the parent perspective. We synthesised the data into three thematic categories: parents' healthcare experiences, psychosocial impacts, and information and support needs.Nineteen articles met review criteria, representing 1856 parents. Parents highlighted extensive difficulties connecting with an engaged clinical team and navigating their child's rare, life-limiting, and progressive condition. Psychosocial challenges were manifold and encompassed physical, economic, social, emotional and psychological implications. Access to coordinated healthcare and community-based psychosocial supports was associated with improved parent coping, psychological resilience and reduced psychological isolation. Analysis identified a critical need to prioritize access to integrated family-centred psychosocial supports throughout distinct stages of their child's condition trajectory.This review will encourage and guide the development of evidence-based and integrated psychosocial resources to optimise quality of life outcomes for of children with dementia and their families.

  View details for DOI 10.1186/s13023-023-02859-3

  View details for PubMedID 37679855

  View details for PubMedCentralID PMC10486052

• Child-centered communication interventions in pediatric oncology: A scoping review and proposed new communication model. Pediatric blood & cancer Høeg, B. L., Sevillano, P. B., Enesco, I., Wakefield, C. E., Larsen, H. B., Bidstrup, P. E. 2023: e30533

  Abstract

  Child-centered communication in pediatric oncology can be challenging. We aimed to review communication interventions with children about cancer treatment and prognosis to identify potentially effective child-centered communication models and approaches. We updated a previous review on communication interventions in oncology and searched MEDLINE, Scopus, and PsychINFO for studies indexed between October 2019 up to October 2022. We further searched for ongoing studies on ClinicalTrials.gov. Communication interventions targeting pediatric oncology patients (below 18 years), with outcomes of communication, psychological symptoms or satisfaction in the target population were eligible. We identified 685 titles/abstracts, screened the full text of 34 studies and included only one published study and two ongoing studies. The published study tested a communication tool to help clinicians inform adolescents about treatment options and facilitate shared decision-making. No communication models were identified. We drew on knowledge from existing studies and guidelines to develop a new child-centered communication model.

  View details for DOI 10.1002/pbc.30533

  View details for PubMedID 37401446

• Precision Medicine Is Changing the Roles of Healthcare Professionals, Scientists, and Research Staff: Learnings from a Childhood Cancer Precision Medicine Trial. Journal of personalized medicine Daly, R., Hetherington, K., Hazell, E., Wadling, B. R., Tyrrell, V., Tucker, K. M., Marshall, G. M., Ziegler, D. S., Lau, L. M., Trahair, T. N., O'Brien, T. A., Collins, K., Gifford, A. J., Haber, M., Pinese, M., Malkin, D., Cowley, M. J., Karpelowsky, J., Drew, D., Jacobs, C., Wakefield, C. E. 2023; 13 (7)

  Abstract

  Precision medicine programs aim to utilize novel technologies to identify personalized treatments for children with cancer. Delivering these programs requires interdisciplinary efforts, yet the many groups involved are understudied. This study explored the experiences of a broad range of professionals delivering Australia's first precision medicine trial for children with poor-prognosis cancer: the PRecISion Medicine for Children with Cancer (PRISM) national clinical trial of the Zero Childhood Cancer Program. We conducted semi-structured interviews with 85 PRISM professionals from eight professional groups, including oncologists, surgeons, clinical research associates, scientists, genetic professionals, pathologists, animal care technicians, and nurses. We analyzed interviews thematically. Professionals shared that precision medicine can add complexity to their role and result in less certain outcomes for families. Although many participants described experiencing a greater emotional impact from their work, most expressed very positive views about the impact of precision medicine on their profession and its future potential. Most reported navigating precision medicine without formal training. Each group described unique challenges involved in adapting to precision medicine in their profession. Addressing training gaps and meeting the specific needs of many professional groups involved in precision medicine will be essential to ensure the successful implementation of standard care.

  View details for DOI 10.3390/jpm13071033

  View details for PubMedID 37511646

  View details for PubMedCentralID PMC10381580

• Effects of digital psychological interventions on physical symptoms in cancer patients: A systematic review and meta-analysis. General hospital psychiatry Zhang, T., Wakefield, C. E., Ren, Z., Chen, W., Du, X., Shi, C., Lai, L., Zhao, C., Gao, Y., Chen, Z., Zhou, Y., Wu, T., Cai, M. 2023; 84: 47-59

  Abstract

  This meta-analysis was to assess the efficacy of digital psychological interventions to improve physical symptoms (i.e., fatigue, pain, disturbed sleep, and physical well-being) among cancer patients, as well as to evaluate the variables that possibly moderate intervention effects.Nine databases were searched for the literature up to February 2023. Two reviewers independently conducted a quality assessment. Effect sizes were reported as the standardized mean difference (Hedge's g) and estimated using a random-effects model.The meta-analysis included 44 randomized clinical trials comprising 7200 adults with cancer. Digital psychological interventions were associated with significant improvements in short-term fatigue (g = -0.33; 95% CI, -0.58 to -0.07) and disturbed sleep (g = -0.36; 95% CI, -0.57 to -0.15), but with non-significant changes in pain (g = -0.23; 95% CI, -0.68 to 0.21) and physical well-being (g = 0.31; 95% CI, -0.18 to 0.80). Additionally, no alleviation in long-term physical symptoms was observed. In subgroup analysis, results suggest that the country significantly moderated the effectiveness of digital psychological interventions in alleviating fatigue.Digital psychological interventions can be effective for improving short-term fatigue and disturbed sleep in patients with cancer. Clinicians could consider digital psychological interventions as a possible and efficient addition to better manage some of the physical symptoms during and after cancer treatment.

  View details for DOI 10.1016/j.genhosppsych.2023.05.016

  View details for PubMedID 37385139

• A systematic review of biological changes in surgeons' acute stress levels during surgery. Surgery in practice and science Budden, A., Song, S., Henry, A., Wakefield, C. E., Abbott, J. 2023; 13: 100174

  Abstract

  While a degree of stress facilitates learning and task performance, excessive stress in surgeons may lead to poor patient outcomes, with maladaptive stress as a risk factor for surgeon burnout or self-harm through mechanisms including substance abuse, and suicide. We aim to systematically review publications investigating how measures of surgeons' acute biological stress change during surgery.Medline, Embase, Cochrane library, and The United States, Australian, and European clinical trials registries were searched using the terms stress; surgeon; cortisol; skin conductance; and heart rate. Studies had to report at least one measure of biological stress related to surgery or simulated surgical exercise and have been published between January 1996 to June 2022.Twenty-eight studies with a total of 433 participants met inclusion criteria with cortisol, heart rate, heart rate variability, and electrodermal activity being reported. Salivary cortisol was measured in four studies with conflicting directional changes reported. Mean heart rate increased in nine studies (by 6-22 beats/minute), however the impact of the physical work of surgery was not reported. Heart rate variability, as measured by low-frequency to high-frequency ratio, was significantly increased in three of six studies. One study measured electrodermal activity reporting significant increase in skin conductance in a simulation setting.While some biological measures appear able to detect changes in acute stress in surgeons (particularly heart rate), appropriate measures of stress during non-stressful and stressful surgery are yet to be fully identified. Importantly, there are no current pathways for identifying surgeons at risk of burnout or self-harm and this is a critical unmet research need.

  View details for DOI 10.1016/j.sipas.2023.100174

  View details for PubMedID 39845388

  View details for PubMedCentralID PMC11749923

• Reply to E.C. Dee et al. JCO global oncology Koczwara, B., Chan, A., Jefford, M., Lam, W. W., Taylor, C., Wakefield, C. E., Pathy, N. B., Gyawali, B., Harvet, G., Lou, Y., Pramesh, C. S., Takahashi, M., Yu, K., Chan, R. J. 2023; 9: e2300102

  View details for DOI 10.1200/GO.23.00102

  View details for PubMedID 37290019

  View details for PubMedCentralID PMC10497264

• Protocol for a comprehensive prospective cohort study of trio-based whole-genome sequencing for underlying cancer predisposition in paediatric and adolescent patients newly diagnosed with cancer: the PREDICT study. BMJ open Fuentes Bolanos, N. A., Padhye, B., Daley, M., Hunter, J., Hetherington, K., Warby, M., Courtney, E., Kirk, J., Josephi-Taylor, S., Chen, Y., Alvaro, F., Barlow-Stewart, K., Wong-Erasmus, M., Barahona, P., Ajuyah, P., Altekoester, A. K., Tyrrell, V. J., Lau, L. M., Wakefield, C., Sylvester, D., Tucker, K., Pinese, M., Dalla Pozza, L., O'Brien, T. A. 2023; 13 (5): e070082

  Abstract

  Identifying an underlying germline cancer predisposition (CP) in a child with cancer has potentially significant implications for both the child and biological relatives. Cohort studies indicate that 10%-15% of paediatric cancer patients carry germline pathogenic or likely pathogenic variants in cancer predisposition genes, but many of these patients do not meet current clinical criteria for genetic testing. This suggests broad tumour agnostic germline testing may benefit paediatric cancer patients. However, the utility and psychosocial impact of this approach remain unknown. We hypothesise that an approach involving trio whole-genome germline sequencing (trio WGS) will identify children and families with an underlying CP in a timely fashion, that the trio design will streamline cancer risk counselling to at-risk relatives if CP was inherited, and that trio testing will not have a negative psychosocial impact on families.To test this, we present the Cancer PREDisposition In Childhood by Trio sequencing study (PREDICT). This study will assess the clinical utility of trio WGS to identify CP in unselected patients with cancer 21 years or younger in New South Wales, Australia. PREDICT will perform analysis of biological parents to determine heritability and will examine the psychosocial impact of this trio sequencing approach. PREDICT also includes a broad genomics research programme to identify new candidate genes associated with childhood cancer risk.By evaluating the feasibility, utility and psychosocial impact of trio WGS to identify CP in paediatric cancer, PREDICT will inform how such comprehensive testing can be incorporated into a standard of care at diagnosis for all childhood cancer patients.NCT04903782.

  View details for DOI 10.1136/bmjopen-2022-070082

  View details for PubMedID 37253493

  View details for PubMedCentralID PMC10254808

• Childhood Cancer Survivors' Reported Late Effects, Motivations for Seeking Survivorship Care, and Patterns of Attendance. The oncologist Signorelli, C., Wakefield, C. E., McLoone, J. K., Johnston, K. A., Mertens, A. C., Osborn, M., Cohn, R. J. 2023; 28 (5): e276-e286

  Abstract

  Childhood cancer survivors are vulnerable to long-term treatment-related health conditions, which can lead to poor quality of life. Little data exist on the overall health of long-term Australian and New Zealand childhood cancer survivors or on survivors' motivations for attending survivorship clinics.This study administers a cross-sectional questionnaire to long-term survivors ≥5 years from their primary diagnosis. We compared participant-reported number of late effects by a cancer diagnosis, and identified clinical (eg, treatment) and demographic (eg, age) factors that were associated with late effects burden and engagement in cancer survivorship care.A total of 634 participants completed questionnaires (48% male, mean age = 21.7 years). Most participants (79%) reported at least one cancer-related late effect, most commonly fatigue (40%) and memory/learning difficulties (34%). Brain tumor survivors reported a higher total number of late effects than survivors with other diagnoses (mean = 5.7 vs. 3.2, P < .001). Participants' most commonly reported motivators for engaging in care were to understand problems that may occur later in life because of their cancer and/or treatment (98.5%) and to get reassurance about one's health (97.4%). The proportion of survivors endorsing each motivating factor was similar across cancer diagnoses, with the exception of learning more about insurance and pensions (highest in brain tumor survivors = 80%). In multivariable analyses, survivors were more likely to report being engaged in survivorship care if they were younger (P < .001), less time had elapsed since their diagnosis (P < .001), or they reported a higher number of motivating factors (P = .016).Survivors report a range of health problems decades after treatment completion. Understanding the burden of late effects, and motivators for seeking survivorship care to manage these health problems, is important for ensuring that tailored interventions or services are available to meet the needs of this growing population and to design effective models of survivorship care.

  View details for DOI 10.1093/oncolo/oyad004

  View details for PubMedID 36944156

  View details for PubMedCentralID PMC10166180

• Hope in the era of precision oncology: a qualitative study of informal caregivers' experiences. BMJ open Kenny, K., Williams Veazey, L., Broom, A., Peterie, M., Page, A., Prainsack, B., Wakefield, C. E., Itchins, M., Khasraw, M., Lwin, Z. 2023; 13 (5): e065753

  Abstract

  To explore informal caregivers' perspectives on precision medicine in cancer care.Semi-structured interviews with the informal caregivers of people living with cancer and receiving targeted/immunotherapies. Interview transcripts were analysed thematically using a framework approach.Recruitment was facilitated by two hospitals and five Australian cancer community groups.Informal caregivers (n=28; 16 men, 12 women; aged 18-80) of people living with cancer and receiving targeted/immunotherapies.Thematic analysis identified three findings, centred largely on the pervasive theme of hope in relation to precision therapies including: (1) precision as a key component of caregivers' hope; (2) hope as a collective practice between patients, caregivers, clinicians and others, which entailed work and obligation for caregivers; and (3) hope as linked to expectations of further scientific progress, even if there may be no personal, immediate benefit.Innovation and change in precision oncology are rapidly reconfiguring the parameters of hope for patients and caregivers, creating new and difficult relational moments and experiences in everyday life and in clinical encounters. In the context of a shifting therapeutic landscape, caregivers' experiences illustrate the need to understand hope as collectively produced, as emotional and moral labour, and as entangled in broader cultural expectations of medical advances. Such understandings may help clinicians as they guide patients and caregivers through the complexities of diagnosis, treatment, emerging evidence and possible futures in the precision era. Developing a better understanding of informal caregivers' experiences of caring for patients receiving precision therapies is important for improving support to patients and their caregivers.

  View details for DOI 10.1136/bmjopen-2022-065753

  View details for PubMedID 37130677

  View details for PubMedCentralID PMC10163471

• Adapting the Voicing My CHOiCES Advance Care Planning Communication Guide for Australian Adolescents and Young Adults with Cancer: Appropriateness, Acceptability, and Considerations for Clinical Practice. Cancers Sansom-Daly, U. M., Zhang, M., Evans, H. E., McLoone, J., Wiener, L., Cohn, R. J., Anazodo, A., Patterson, P., Wakefield, C. E. 2023; 15 (7)

  Abstract

  Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Procedure: Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness-yes/no, helpfulness and whether content caused stress-1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statistics and to identify prominent themes. Results: In terms of acceptability, almost all participants (96%) rated VMC as appropriate overall. Perceived helpfulness to their situation (to themselves/their child/their patients), to others, and stressfulness were rated, on average, as 4.1, 4.0, and 2.7/5, respectively. Stress was attributed to individual and personal factors, as well as interpersonal worries. All sections were considered more beneficial than burdensome, except for the Spiritual Thoughts section (Section 6). Conclusions: While VMC is an acceptable advance care planning guide for AYAs with cancer, changes to the guide were suggested for the Australian context. Health professionals implementing VMC will need to address and mitigate anticipated sources of stress identified here. Future research evaluating the impact of a new culturally adapted Australian VMC guide is an important next step. Finally, the clinical implications of the present study are suggested.

  View details for DOI 10.3390/cancers15072129

  View details for PubMedID 37046790

  View details for PubMedCentralID PMC10093261

• International Survey of Pediatric Oncologists' Beliefs and Communication Practices Regarding Symptom Self-Monitoring by Childhood Cancer Survivors. JCO oncology practice Webster, S. N., Spunt, S. L., Cunningham, S. J., Wakefield, C. E., Smith, S. M., Alberts, N. M., Palesh, O., Simons, L. E., Heathcote, L. C. 2023: OP2200630

  Abstract

  Childhood cancer survivors report self-monitoring for and worrying about symptoms of disease recurrence and secondary cancers, although symptom-related worry is associated with poorer health-related quality of life. This survey captured pediatric oncologists' beliefs and communication practices regarding symptom self-monitoring for childhood cancer survivors.Using a closed-loop snowball sampling technique, pediatric oncologists completed an online survey regarding the importance of symptom self-monitoring for off-therapy patients, the degree to which symptom self-monitoring was perceived to cause stress and worry, and communication practices.196 pediatric oncologists (White [78%]; female [64%]; Mage = 47 years) from every continent except Antarctica participated. Oncologists believed it is important for off-therapy patients to self-monitor for symptoms of cancer recurrence (90%) and treatment late effects (94%), although some noted that recurrence (30%) and late effects (55%) are typically detected by routine surveillance before symptoms appear. Oncologists varied in their beliefs that off-therapy patients do (31%) or do not (31%) worry unnecessarily about symptoms of recurrence. Two thirds (62%) of oncologists reported often/always discussing with off-therapy patients which symptoms could indicate cancer recurrence, whereas fewer than half (43%) often/always discussed which symptoms were unlikely to indicate recurrence. Oncologists identified a need for education regarding how to communicate around symptom self-monitoring and the potential utility of a screening tool to identify those who worry excessively.Despite nearly universal belief that their off-therapy patients should self-monitor for symptoms of disease recurrence and late effects, a substantial proportion of pediatric oncologists do not counsel patients on symptom self-monitoring. Since nearly one-third believe that off-therapy patients worry unnecessarily about symptoms of recurrence, improving patient education regarding which symptoms are and are not medically concerning could decrease stress and improve health-related quality of life for pediatric cancer survivors.

  View details for DOI 10.1200/OP.22.00630

  View details for PubMedID 36800566

• The Impact of the Early COVID-19 Global Pandemic on Children Undergoing Active Cancer Treatment and Their Parents. Current oncology (Toronto, Ont.) Tran, A., Hou, S. H., Forbes, C., Cho, S., Forster, V. J., Stokoe, M., Wakefield, C. E., Wiener, L., Heathcote, L. C., Michel, G., Patterson, P., Reynolds, K., Schulte, F. S. 2023; 30 (2): 2441-2456

  Abstract

  (1) Background: The COVID-19 global pandemic has impacted people worldwide with unique implications for vulnerable groups. In this cross-sectional study, we examined the impact of the early pandemic on children undergoing active cancer treatment and their parents. (2) Methods: In May 2020, 30 parents of children undergoing active cancer treatment completed an online survey regarding the impact of COVID-19 on their child's cancer care, perceived utility of telemedicine, and child and parent mental health status. (3) Results: Most participants (87%) reported that they did not experience any changes to major cancer treatments. Among those who reported using telemedicine, 78% reported this to be beneficial. Over half of the participants reported that their child's mental health status was worse now than prior to the COVID-19 global pandemic. Parent-reported child anxiety scores were significantly higher for those who reported changes to mental health care for their child compared to those who did not report the same, t(25.99) = -3.04, p = 0.005. (4) Conclusion: Child and parent mental health status were affected when compared to pre-pandemic. Telemedicine appears to be a promising complement to face-to-face meetings for some families and warrants further exploration.

  View details for DOI 10.3390/curroncol30020186

  View details for PubMedID 36826147

  View details for PubMedCentralID PMC9954946

• Cancer Survivorship in the Indo-Pacific: Priorities for Progress. JCO global oncology Koczwara, B., Chan, A., Jefford, M., Lam, W. W., Taylor, C., Wakefield, C. E., Bhoo-Pathy, N., Gyawali, B., Harvet, G., Lou, Y., Pramesh, C. S., Takahashi, M., Ke, Y., Chan, R. J. 2023; 9: e2200305

  View details for DOI 10.1200/GO.22.00305

  View details for PubMedID 36749908

  View details for PubMedCentralID PMC10166466

• Proband-mediated interventions to increase disclosure of genetic risk in families with a BRCA or Lynch syndrome condition: a systematic review. European journal of human genetics : EJHG Young, A. L., Imran, A., Spoelma, M. J., Williams, R., Tucker, K. M., Halliday, J., Forrest, L. E., Wakefield, C. E., Butow, P. N. 2023; 31 (1): 18-34

  Abstract

  Interventions to assist family communication about inherited cancer risk have the potential to improve family cancer outcomes. This review aimed to evaluate the efficacy of proband-mediated interventions employed within genetics clinics to increase disclosure of genetic risk to at-risk relatives. MEDLINE, Embase, CINAHL, PubMed and PsycINFO were searched for publications between 1990-2020. The quality of studies was assessed. From 5605 records reviewed, 9 studies (4 randomised control trials and 5 cohort studies) were included involving families with BRCA1, BRCA2 and Lynch syndrome. Intervention delivery modes included genetic counselling with additional telephone or in-person follow-up, letters, videos, and decision aids. The percentages of at-risk relatives informed by the proband about their risk ranged from 54.0% to 95.5% in the intervention or family-mediated comparison group. Of those who were informed, 24.4-60.0% contacted a genetics clinic and 22.8-76.2% had genetic testing after they were counselled at a genetics clinic. Significant differences between intervention and control group were reported on all three outcomes by one study, and with relatives contacting a genetics clinic by another study. The studies suggest but do not conclusively show, that tailored genetic counselling with additional follow-up can increase both the proportion of informed relatives and relatives who contact the genetics clinic. With the increase in germline testing, interventions are required to consider the family communication process and address post-disclosure variables (e.g., relative's perceptions, emotional reactions) through engagement with probands and relatives to maximise the public health benefit of identifying inherited cancer risk in families.

  View details for DOI 10.1038/s41431-022-01200-z

  View details for PubMedID 36253533

  View details for PubMedCentralID PMC9822896

• 'Like ships in the night': A qualitative investigation of the impact of childhood cancer on parents' emotional and sexual intimacy. Pediatric blood & cancer Chow, W. K., Hetherington, K., McGill, B. C., Sansom-Daly, U. M., Daly, R., Miles, G., Cohn, R. J., Wakefield, C. E. 2022; 69 (12): e30015

  Abstract

  Childhood cancer is highly distressing for families and can place strain on parents' relationships. Parental functioning and cohesiveness are important predictors of family functioning and adaptation to stress. This qualitative study investigated the perceived impact of childhood cancer on parents' relationship with their partner, with a focus on emotional and sexual intimacy.We conducted semi-structured interviews with 48 parents (42 mothers, six fathers) of children under the age of 18 who had completed curative cancer treatment. We analysed the interviews using thematic analysis.At interview, parents were on average 40.7 years old (SD = 5.5, range: 29-55 years), and had a child who had completed cancer treatment between 3 months and 10.8 years previously (M = 22.1 months). All participants were living with their partner in a married/de facto relationship. Most parents reported that their child's cancer treatment had a negative impact on emotional and sexual intimacy with their partner, with some impacts extending to the post-treatment period. Reasons for compromised intimacy included exhaustion and physical constraints, having a shifted focus, and discord arising from different coping styles. Some parents reported that their relationship strengthened. Parents also discussed the impact of additional stressors unrelated to the child's cancer experience.Parents reported that childhood cancer had a negative impact on aspects of emotional and sexual intimacy, although relationship strengthening was also evident. It is important to identify and offer support to couples who experience ongoing relationship stress, which may have adverse effects on family functioning and psychological wellbeing into survivorship.

  View details for DOI 10.1002/pbc.30015

  View details for PubMedID 36200485

• 'Advocacy groups are the connectors': Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics. Health expectations : an international journal of public participation in health care and health policy Nguyen, C. Q., Kariyawasam, D., Alba-Concepcion, K., Grattan, S., Hetherington, K., Wakefield, C. E., Woolfenden, S., Dale, R. C., Palmer, E. E., Farrar, M. A. 2022; 25 (6): 3175-3191

  Abstract

  Biomedical progress has facilitated breakthrough advanced neurotherapeutic interventions, whose potential to improve outcomes in rare neurological diseases has increased hope among people with lived experiences and their carers. Nevertheless, gene, somatic cell and other advanced neurotherapeutic interventions carry significant risks. Rare disease patient organizations (RDPOs) may enhance patient experiences, inform expectations and promote health literacy. However, their perspectives are understudied in paediatric neurology. If advanced neurotherapeutics is to optimize RDPO contributions, it demands further insights into their roles, interactions and support needs.We used a mixed-methodology approach, interviewing 20 RDPO leaders representing paediatric rare neurological diseases and following them up with two online surveys featuring closed and open-ended questions on advanced neurotherapeutics (19/20) and negative mood states (17/20). Qualitative and quantitative data were analysed using thematic discourse analysis and basic descriptive statistics, respectively.Leaders perceived their roles to be targeted at educational provision (20/20), community preparation for advanced neurotherapeutic clinical trials (19/20), information simplification (19/20) and focused research pursuits (20/20). Although most leaders perceived the benefits of collaboration between stakeholders, some cited challenges around collaborative engagement under the following subthemes: conflicts of interest, competition and logistical difficulties. Regarding neurotherapeutics, RDPO leaders identified support needs centred on information provision, valuing access to clinician experts and highlighting a demand for co-developed, centralized, high-level and understandable, resources that may improve information exchange. Leaders perceived a need for psychosocial support within themselves and their communities, proposing that this would facilitate informed decision-making, reduce associated psychological vulnerabilities and maintain hope throughout neurotherapeutic development.This study provides insights into RDPO research activities, interactions and resource needs. It reveals a demand for collaboration guidelines, central information resources and psychosocial supports that may address unmet needs and assist RDPOs in their advocacy.In this study, RDPO leaders were interviewed and surveyed to examine their perspectives and roles in advanced neurotherapeutic development. Some participants sent researchers postinterview clarification emails regarding their responses to questions.

  View details for DOI 10.1111/hex.13625

  View details for PubMedID 36307981

  View details for PubMedCentralID PMC9700154

• Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies. PEC innovation Nevin, S. M., Wakefield, C. E., Dadich, A., LeMarne, F., Macintosh, R., Beavis, E., Sachdev, R., Bye, A., Nunn, K., Palmer, E. E. 2022; 1: 100014

  Abstract

  To understand parents' of children with developmental and epileptic encephalopathies needs and preferences for psychological resources.Using a person-based approach, a multidisciplinary panel of clinician and researchers (n = 9) hosted a priority-setting workshop to 1) understand parents' needs and preferences for psychological resources and 2) to develop 'guiding principles' to inform a future suite of psychological resources. The multidisciplinary panel analysed the parent priority-setting workshop data, using a combination of thematic and lexical analysis.Thematic analysis identified six key domains wherein parents (n = 8) prioritised a need for psychological resources to support adaptation to their child's genetic DEE diagnosis. Lexical analysis revealed that connection to diagnosis-specific resources provided a pathway to promote enhanced psychological adaptation, by reducing social isolation and reorienting parents towards feelings of hope. Combination of both analyses generated six thematic informed 'guiding principles'.Codesigned psychological resources may help parents to cope with the unique and complex interplay of stressors associated with their child's DEE diagnosis and treatment. Our 'guiding principles' will be translated to inform a future suite of tailored psychological resources.This study demonstrates an innovative codesign approach to inform tailored psychological resources for families of children with rare genetic conditions.

  View details for DOI 10.1016/j.pecinn.2021.100014

  View details for PubMedID 37364015

  View details for PubMedCentralID PMC10194388

• eHealth tools for childhood cancer survivorship care: A qualitative analysis of survivors', parents', and general practitioners' views. PEC innovation Schaffer, M., McLoone, J. K., Wakefield, C. E., Brierley, M. E., Girgis, A., McCarthy, M. C., Thornton-Benko, E., Chan, R. J., Johnston, K. A., Cohn, R. J., Signorelli, C. 2022; 1: 100010

  Abstract

  We assessed the acceptability of, and perceived benefits/barriers to, using Electronic health (eHealth) technology for childhood cancer survivorship care.We interviewed survivors, their parents, and their nominated GP. We described a hypothetical eHealth tool to manage survivorship care and asked their likely use of, and perceived benefits/concerns for, the use of the tool.31 survivors (mean age = 27.0), 29 parents (survivors' mean age = 12.6), and 51 GPs (mean years practising = 28.2) participated. Most survivors/parents (85%) and GPs (75%) indicated that they would be willing to use an eHealth tool. Survivors/parents reported that an eHealth tool would increase their confidence in their ability, and their GP's ability, to manage their survivorship care. GPs agreed that an eHealth tool would provide easier access to survivors' medical information and increase their capacity to provide support during survivorship. Some GPs (7%) and survivors (43%) reported being hesitant to use eHealth tools due to privacy/security concerns.Overall, eHealth tools appear acceptable and may help to improve the management of late effects for childhood cancer survivors and assist their GPs to coordinate their care.Concerns raised by key stakeholders should be addressed in the design of eHealth technologies to optimise their uptake and effectiveness.

  View details for DOI 10.1016/j.pecinn.2021.100010

  View details for PubMedID 37364028

  View details for PubMedCentralID PMC10194118

• Unmet and under-met needs among Indian parents of children with neurological disorders. Journal of pediatric nursing Chittem, M., Kelada, L., Muppavaram, N., Lingappa, L., Wakefield, C. E. 2022; 63: e1-e9

  Abstract

  Parents of children with neurological disorders commonly report having unmet needs related to their child's care. Mixed methods research is needed with parents of children with neurological disorders in India in order to: 1) quantify which needs are unmet and under-met, and 2) qualitatively explore how parents perceive their unmet and under-met needs.This concurrent mixed-methods study used a convergence model of triangulation design. Parents of children with neurological disorders receiving treatment in a children's hospital in Hyderabad, India completed questionnaires (n = 205) on unmet/under-met needs. Twenty-five of these parents then completed in-depth interviews exploring experiential aspects of unmet needs.Quantitative analysis suggested that education about the child's illness and medical needs were the most frequent unmet needs. Parents needed their child's condition explained to them (91.7%) and greater continuity of their child's care (85.4%). Qualitative analysis suggested that parents reported struggling to find a specialist who was knowledgeable about their child's condition. Though parents living in rural areas quantitatively reported fewer unmet needs (child's medical care, care coordination, and communication) than parents living in the city (B = 0.92 [95%CI = 0.64,1.20] for medical care needs), the qualitative data showed this may be due to lower expectations from the health system.Parents of children with neurological disorders in India frequently report unmet and under-met needs.Community-based interventions coupled with training nurses on information provision could help bridge the gap between what is offered by hospital systems, and what is needed by parents, in terms of information and support.

  View details for DOI 10.1016/j.pedn.2021.11.015

  View details for PubMedID 34848111

• Childhood cancer survivorship: barriers and preferences. BMJ supportive & palliative care Signorelli, C., Wakefield, C., McLoone, J. K., Fardell, J., Jones, J. M., Turpin, K. H., Emery, J., Michel, G., Downie, P., Skeen, J. E., Cohn, R. 2022; 12 (e5): e687-e695

  Abstract

  Many survivors are disengaged from follow-up, mandating alternative models of survivorship-focused care for late effects surveillance. We explored survivors' barriers to accessing, and preferences for survivorship care.We invited Australian and New Zealand survivors of childhood cancer from three age groups: <16 years (represented by parents), 16-25 years (adolescent and young adults (AYAs)) and >25 years ('older survivors'). Participants completed questionnaires and optional interviews.633 survivors/parents completed questionnaires: 187 parents of young survivors (mean age: 12.4 years), 251 AYAs (mean age: 20.6 years) and 195 older survivors (mean age: 32.5 years). Quantitative data were complemented by 151 in-depth interviews. Most participants, across all age groups, preferred specialised follow-up (ie, involving oncologists, nurses or a multidisciplinary team; 86%-97%). Many (36%-58%) were unwilling to receive community-based follow-up. More parents (75%) than AYAs (58%) and older survivors (30%) were engaged in specialised follow-up. While follow-up engagement was significantly lower in older survivors, survivors' prevalence of late effects increased. Of those attending a follow-up clinic, 34%-56% were satisfied with their care, compared with 14%-15% of those not receiving cancer-focused care (p<0.001). Commonly reported barriers included lack of awareness about follow-up availability (67%), followed by logistical (65%), care-related beliefs (59%) and financial reasons (57%). Older survivors (p<0.001), living outside major cities (p=0.008), and who were further from diagnosis (p=0.014) reported a higher number of barriers.Understanding patient-reported barriers, and tailoring care to survivors' follow-up preferences, may improve engagement with care and ensure that the survivorship needs of this population are met.

  View details for DOI 10.1136/bmjspcare-2019-002001

  View details for PubMedID 31712388

• Parent perceptions of their child's and their own physical activity after treatment for childhood cancer. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Ha, L., Wakefield, C. E., Fardell, J., Cohn, R. J., Simar, D., Signorelli, C., Mizrahi, D. 2022; 30 (11): 8947-8957

  Abstract

  Parents are important facilitators of physical activity for children, yet little is known about the perceptions of parents of childhood cancer survivors. We investigated parent perceptions of their own and their child's physical activity levels after cancer treatment and examined associations with clinical, demographic, and psychosocial factors.We conducted a cross-sectional survey among 125 parents and 125 survivors. Parents reported on the perceived importance of their child being physically active and concerns regarding exercising after cancer treatment.Parents and survivors self-reported median (range) of 127.5 (0-1260) and 220 (0-1470) min/week of moderate-to-vigorous physical activity. Most parents (n = 109, 98%) believed that physical activity was highly important for their child. Some parents (n = 19, 17%) reported concerns, most commonly regarding exercise safety (n = 7, 22%). Parents were more likely to perceive that their child should increase physical activity if their child was an adolescent and had high body fat percentage.Physical activity levels varied widely among survivors, reflecting factors including parents' lifestyles, limited understanding of exercise benefits and perceptions of risk. Given survivors' insufficient physical activity levels and sedentary behaviour among families, embedding physical activity promotion into health systems and follow-up support could benefit the entire family unit.

  View details for DOI 10.1007/s00520-022-07288-9

  View details for PubMedID 35909162

  View details for PubMedCentralID PMC9340709

• Parents' understanding of genome and exome sequencing for pediatric health conditions: a systematic review. European journal of human genetics : EJHG Gereis, J., Hetherington, K., Ha, L., Robertson, E. G., Ziegler, D. S., Barlow-Stewart, K., Tucker, K. M., Marron, J. M., Wakefield, C. E. 2022; 30 (11): 1216-1225

  Abstract

  Genome and exome sequencing (GS/ES) are increasingly being used in pediatric contexts. We summarize evidence regarding the actual and perceived understanding of GS/ES of parents of a child offered testing for diagnosis and/or management of a symptomatic health condition. We searched four databases (2008-2021) and identified 1264 unique articles, of which 16 met inclusion criteria. We synthesized data from qualitative and quantitative studies and organized results using Ayuso et al. (2013)'s framework of key elements of information for informed consent to GS/ES. Many of the parents represented had prior experience with genetic testing and accessed a form of genetic counseling. Parents' understanding was varied across the domains evaluated. Parents demonstrated understanding of the various potential direct clinical benefits to their child undergoing GS/ES, including in relation to other genetic tests. We found parents had mixed understanding of the nature of potential secondary findings, and of issues related to data privacy, confidentiality, and usage of sequencing results beyond their child's clinical care. Genetic counseling consultations improved understanding. Our synthesis indicates that ES/GS can be challenging for families to understand and underscores the importance of equipping healthcare professionals to explore parents' understanding of ES/GS and the implications of testing for their child.

  View details for DOI 10.1038/s41431-022-01170-2

  View details for PubMedID 35999452

  View details for PubMedCentralID PMC9626631

• Quality of Life (QoL) of Children and Adolescents Participating in a Precision Medicine Trial for High-Risk Childhood Cancer. Cancers Hetherington, K., Wakefield, C. E., Kunalan, K. P., Donoghoe, M. W., McGill, B. C., Fardell, J. E., Daly, R., Deyell, R. J., Ziegler, D. S. 2022; 14 (21)

  Abstract

  Precision medicine is changing the treatment of childhood cancer globally, however little is known about quality of life (QoL) in children and adolescents participating in precision medicine trials. We examined QoL among patients enrolled in PRISM, the Zero Childhood Cancer Program's precision medicine trial for high-risk childhood cancer. We assessed patient QoL via self-report (aged 12-17 years) and parent-proxy (aged 4-17 years) completion of the EQ-5D-Y. We analysed data using descriptive statistics and regression models. Patients (n = 23) and parents (n = 136) provided data after trial enrolment and following receipt of trial results and treatment recommendations (n = 8 patients, n = 84 parents). At enrolment, most patients were experiencing at least some difficulty across more than one QoL domain (81% patient self-report, 83% parent report). We did not find strong evidence of a change in QoL between timepoints, or of demographic or disease factors that predicted parent-reported patient QoL (EQ-VAS) at enrolment. There was strong evidence that receiving a treatment recommendation but not a change in cancer therapy was associated with poorer parent-reported patient QoL (EQ-VAS; Mdiff = -22.5, 95% CI: -36.5 to -8.5, p = 0.006). Future research needs to better understand the relationship between treatment decisions and QoL and would benefit from integrating assessment of QoL into routine clinical care.

  View details for DOI 10.3390/cancers14215310

  View details for PubMedID 36358729

  View details for PubMedCentralID PMC9656810

• Childhood cancer survivorship care: A qualitative study of healthcare providers' professional preferences. Frontiers in oncology McLoone, J. K., Chen, W., Wakefield, C. E., Johnston, K., Bell, R., Thornton-Benko, E., Cohn, R. J., Signorelli, C. 2022; 12: 945911

  Abstract

  Childhood cancer survivorship care is a complex specialty, though it is increasingly being integrated into the general practitioner's (GP) remit. Establishing the essential components of tertiary- and primary-led care, to maximize the benefits and overcome the challenges inherent to each, is essential to inform the development of survivor-centered, sustainable care models.We used the qualitative principles of semi-structured interviewing, verbatim transcription, coding (supported by NVivo12) and thematic analysis, to collect and evaluate the views and preferences of pediatric oncologists, survivorship nurse coordinators, and GPs currently caring for childhood cancer survivors.Seventy healthcare providers (19 oncology staff and 51 GPs) from 11 tertiary hospitals and 51 primary practices across Australia and New Zealand participated. Participants reported specialist expertise and holistic family-centered care as the key benefits of tertiary and primary care respectively. Participants reported that tertiary-led survivorship care was significantly challenged by a lack of dedicated funding and costs/travel burden incurred by the survivor, whereas primary-led survivorship care was challenged by insufficient GP training and GPs' reliance on oncologist-developed action plans to deliver guideline-based care. GPs also reported a need for ongoing access to survivorship expertise/consultants to support care decisions at critical times. The discharge of survivors into primary care limited late-effects data collection and the rapid implementation of novel research findings.Healthcare professionals report that while a risk-stratified, collaborative model of survivor-centered care is optimal, to be implemented successfully, greater provisions for the ongoing engagement of GPs and further access to GP education/training are needed.

  View details for DOI 10.3389/fonc.2022.945911

  View details for PubMedID 36267959

  View details for PubMedCentralID PMC9577072

• Prospective longitudinal evaluation of treatment-related toxicity and health-related quality of life during the first year of treatment for pediatric acute lymphoblastic leukemia. BMC cancer Schilstra, C. E., McCleary, K., Fardell, J. E., Donoghoe, M. W., McCormack, E., Kotecha, R. S., Lourenco, R. D., Ramachandran, S., Cockcroft, R., Conyers, R., Cross, S., Dalla-Pozza, L., Downie, P., Revesz, T., Osborn, M., Alvaro, F., Wakefield, C. E., Marshall, G. M., Mateos, M. K., Trahair, T. N. 2022; 22 (1): 985

  Abstract

  Pediatric acute lymphoblastic leukemia (ALL) therapy is accompanied by treatment-related toxicities (TRTs) and impaired quality of life. In Australia and New Zealand, children with ALL are treated with either Children's Oncology Group (COG) or international Berlin-Frankfurt-Munster (iBFM) Study Group-based therapy. We conducted a prospective registry study to document symptomatic TRTs (venous thrombosis, neurotoxicity, pancreatitis and bone toxicity), compare TRT outcomes to retrospective TRT data, and measure the impact of TRTs on children's general and cancer-related health-related quality of life (HRQoL) and parents' emotional well-being.Parents of children with newly diagnosed ALL were invited to participate in the ASSET (Acute Lymphoblastic Leukaemia Subtypes and Side Effects from Treatment) study and a prospective, longitudinal HRQoL study. TRTs were reported prospectively and families completed questionnaires for general (Healthy Utility Index Mark 3) and cancer specific (Pediatric Quality of Life Inventory (PedsQL)-Cancer Module) health related quality of life as well the Emotion Thermometer to assess emotional well-being.Beginning in 2016, 260 pediatric patients with ALL were enrolled on the TRT registry with a median age at diagnosis of 59 months (range 1-213 months), 144 males (55.4%), majority with Pre-B cell immunophenotype, n = 226 (86.9%), 173 patients (66.5%) treated according to COG platform with relatively equal distribution across risk classification sub-groups. From 2018, 79 families participated in the HRQoL study through the first year of treatment. There were 74 TRT recorded, reflecting a 28.5% risk of developing a TRT. Individual TRT incidence was consistent with previous studies, being 7.7% for symptomatic VTE, 11.9% neurotoxicity, 5.4% bone toxicity and 5.0% pancreatitis. Children's HRQoL was significantly lower than population norms throughout the first year of treatment. An improvement in general HRQoL, measured by the HUI3, contrasted with the lack of improvement in cancer-related HRQoL measured by the PedsQL Cancer Module over the first 12 months. There were no persisting differences in the HRQoL impact of COG compared to iBFM therapy.It is feasible to prospectively monitor TRT incidence and longitudinal HRQoL impacts during ALL therapy. Early phases of ALL therapy, regardless of treatment platform, result in prolonged reductions in cancer-related HRQoL.

  View details for DOI 10.1186/s12885-022-10072-x

  View details for PubMedID 36109702

  View details for PubMedCentralID PMC9479356

• It's made a really hard situation even more difficult: The impact of COVID-19 on families of children with chronic illness. PloS one McLoone, J., Wakefield, C. E., Marshall, G. M., Pierce, K., Jaffe, A., Bye, A., Kennedy, S. E., Drew, D., Lingam, R. 2022; 17 (9): e0273622

  Abstract

  For over two years, the global COVID-19 pandemic has forced major transformations on health, social, and educational systems, with concomitant impacts on mental health. This study aimed to understand the unique and additional challenges faced by children with chronic illness and their families during the COVID-19 era.Parents of children receiving treatment for a chronic illness within the neurology, cancer, renal and respiratory clinics of Sydney Children's Hospital were invited to participate. We used qualitative methodology, including a semi-structured interview guide, verbatim transcription, and thematic analysis supported by QSR NVivo.Thirteen parents of children receiving tertiary-level care, for nine chronic illnesses, participated. Parents reported intense fears relating to their ill child's additional vulnerabilities, which included their risk of developing severe COVID-19 disease and the potential impact of COVID-19-related disruptions to accessing clinical care, medications, allied health support and daily care protocols should their parent contract COVID-19. Parents perceived telehealth as a highly convenient and preferred method for ongoing management of less complex healthcare needs. Parents reported that the accrual of additional stressors and responsibilities during the pandemic, experienced in combination with restricted social interaction and reduced access to usual support networks was detrimental to their own mental health. Hospital-based visitation restrictions reduced emotional support, coping, and resilience for both parents and children and in some cases led to marital discord, sibling distress, and financial loss. Supportive factors included increased time spent together at home during the pandemic and improved hygiene practices at school, which dramatically reduced the incidence of non-COVID-19-related communicable illnesses in chronically ill children.For families caring for a chronically ill child, COVID-19 made a difficult situation harder. The pandemic has highlighted the need for targeted psychosocial intervention for vulnerable families, to mitigate current mental health burden and prevent chronic psychological distress.

  View details for DOI 10.1371/journal.pone.0273622

  View details for PubMedID 36048846

  View details for PubMedCentralID PMC9436103

• Delivering paediatric precision medicine: Genomic and environmental considerations along the causal pathway of childhood neurodevelopmental disorders. Developmental medicine and child neurology Woolfenden, S., Farrar, M. A., Eapen, V., Masi, A., Wakefield, C. E., Badawi, N., Novak, I., Nassar, N., Lingam, R., Dale, R. C. 2022; 64 (9): 1077-1084

  Abstract

  Precision medicine refers to treatments that are targeted to an individual's unique characteristics. Precision medicine for neurodevelopmental disorders (such as cerebral palsy, attention-deficit/hyperactivity disorder, obsessive-compulsive disorder, Tourette syndrome, and autism spectrum disorder) in children has predominantly focused on advances in genomic sequencing technologies to increase our ability to identify single gene mutations, diagnose a multitude of rare neurodevelopmental disorders, and gain insights into pathogenesis. Although targeting specific gene variants with high penetrance will help some children with rare disease, this approach will not help most children with neurodevelopmental disorders. A 'pathway' driven approach targeting the cumulative influence of psychosocial, epigenetic, or cellular factors is likely to be more effective. To optimize the therapeutic potential of precision medicine, we present a biopsychosocial integrated framework to examine the 'gene-environment neuroscience interaction'. Such an approach would be supported through harnessing the power of big data, transdiagnostic assessment, impact and implementation evaluation, and a bench-to-bedside scientific discovery agenda with ongoing clinician and patient engagement. WHAT THIS PAPER ADDS: Precision medicine has predominantly focused on genetic risk factors. The impact of environmental risk factors, particularly inflammatory, metabolic, and psychosocial risks, is understudied. A holistic biopsychosocial model of neurodevelopmental disorder causal pathways is presented. The model will provide precision medicine across the full spectrum of neurodevelopmental disorders.

  View details for DOI 10.1111/dmcn.15289

  View details for PubMedID 35661141

  View details for PubMedCentralID PMC9545914

• What's in a Name? Parents' and Healthcare Professionals' Preferred Terminology for Pathogenic Variants in Childhood Cancer Predisposition Genes. Journal of personalized medicine Hunter, J. D., Robertson, E. G., Hetherington, K., Ziegler, D. S., Marshall, G. M., Kirk, J., Marron, J. M., Denburg, A. E., Barlow-Stewart, K., Warby, M., Tucker, K. M., Lee, B. M., O'Brien, T. A., Wakefield, C. E. 2022; 12 (8)

  Abstract

  Current literature/guidelines regarding the most appropriate term to communicate a cancer-related disease-causing germline variant in childhood cancer lack consensus. Guidelines also rarely address preferences of patients/families. We aimed to assess preferences of parents of children with cancer, genetics professionals, and pediatric oncologists towards terminology to describe a disease-causing germline variant in childhood cancer. Using semi-structured interviews we asked participants their most/least preferred terms from; 'faulty gene,' 'altered gene,' 'gene change,' and 'genetic variant,' analyzing responses with directed content analysis. Twenty-five parents, 6 genetics professionals, and 29 oncologists participated. An equal number of parents most preferred 'gene change,' 'altered gene,' or 'genetic variant' (n = 8/25). Parents least preferred 'faulty gene' (n = 18/25). Half the genetics professionals most preferred 'faulty gene' (n = 3/6); however this was least preferred by the remaining genetics professionals (n = 3/6). Many oncologists most preferred 'genetic variant' (n = 11/29) and least preferred 'faulty gene' (n = 19/29). Participants across all groups perceived 'faulty gene' as having negative connotations, potentially placing blame/guilt on parents/children. Health professionals described challenges selecting a term that was scientifically accurate, easily understood and not distressing to families. Lack of consensus highlights the need to be guided by families' preferred terminology, while providing accurate explanations regarding implications of genetic findings.

  View details for DOI 10.3390/jpm12081327

  View details for PubMedID 36013276

  View details for PubMedCentralID PMC9410181

• A Digital Educational Intervention With Wearable Activity Trackers to Support Health Behaviors Among Childhood Cancer Survivors: Pilot Feasibility and Acceptability Study. JMIR cancer Ha, L., Wakefield, C. E., Mizrahi, D., Diaz, C., Cohn, R. J., Signorelli, C., Yacef, K., Simar, D. 2022; 8 (3): e38367

  Abstract

  Childhood cancer survivors are at increased risk of cardiometabolic complications that are exacerbated by poor health behaviors. Critically, many survivors do not meet physical activity guidelines.The primary aim was to evaluate the feasibility and acceptability of iBounce, a digital health intervention for educating and engaging survivors in physical activity. Our secondary aims were to assess the change in survivors' physical activity levels and behaviors, aerobic fitness, and health-related quality of life (HRQoL) after participating in the iBounce program.We recruited survivors aged 8 to 13 years who were ≥12 months post cancer treatment completion. The app-based program involved 10 educational modules, goal setting, and home-based physical activities monitored using an activity tracker. We assessed objective physical activity levels and behaviors using cluster analysis, aerobic fitness, and HRQoL at baseline and after the intervention (week 12). Parents were trained to reassess aerobic fitness at home at follow-up (week 24).In total, 30 participants opted in, of whom 27 (90%) completed baseline assessments, and 23 (77%) commenced iBounce. Our opt-in rate was 59% (30/51), and most (19/23, 83%) of the survivors completed the intervention. More than half (13/23, 57%) of the survivors completed all 10 modules (median 10, IQR 4-10). We achieved a high retention rate (19/27, 70%) and activity tracker compliance (15/19, 79%), and there were no intervention-related adverse events. Survivors reported high satisfaction with iBounce (median enjoyment score 75%; ease-of-use score 86%), but lower satisfaction with the activity tracker (median enjoyment score 60%). Parents reported the program activities to be acceptable (median score 70%), and their overall satisfaction was 60%, potentially because of technological difficulties that resulted in the program becoming disjointed. We did not observe any significant changes in physical activity levels or HRQoL at week 12. Our subgroup analysis for changes in physical activity behaviors in participants (n=11) revealed five cluster groups: most active, active, moderately active, occasionally active, and least active. Of these 11 survivors, 3 (27%) moved to a more active cluster group, highlighting their engagement in more frequent and sustained bouts of moderate-to-vigorous physical activity; 6 (56%) stayed in the same cluster; and 2 (18%) moved to a less active cluster. The survivors' mean aerobic fitness percentiles increased after completing iBounce (change +17, 95% CI 1.7-32.1; P=.03) but not at follow-up (P=.39).We demonstrated iBounce to be feasible for delivery and acceptable among survivors, despite some technical difficulties. The distance-delivered format provides an opportunity to engage survivors in physical activity at home and may address barriers to care, particularly for regional or remote families. We will use these pilot findings to evaluate an updated version of iBounce.Australian New Zealand Clinical Trials Registry ACTRN12621000259842; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=ACTRN12621000259842.

  View details for DOI 10.2196/38367

  View details for PubMedID 35976683

  View details for PubMedCentralID PMC9434388

• Childhood Cancer Survivors' Adherence to Healthcare Recommendations Made Through a Distance-Delivered Survivorship Program. Journal of multidisciplinary healthcare Alchin, J. E., Signorelli, C., McLoone, J. K., Wakefield, C. E., Fardell, J. E., Johnston, K., Cohn, R. J. 2022; 15: 1719-1734

  Abstract

  Ongoing survivorship care allows childhood cancer survivors the opportunity to address treatment-related health problems and improve their quality of life. However, many survivors do not adhere to their healthcare professionals' recommendations and the factors supporting their adherence remain unclear.Long-term childhood cancer survivors completed the "Re-engage" program, which assessed survivors' heath needs and provided individualised recommendations for health interventions and surveillance developed by an expert multi-disciplinary team (MDT). We measured survivors' recall of, and adherence to, their individualised healthcare recommendations at one and six months post-intervention. We conducted a series of univariate negative binomial regressions to investigate factors associated with the total number of recommendations that were correctly recalled and adhered to.We analysed the data of 25 childhood cancer survivors who participated in Re-engage (mean age = 31.9 years). On average, survivors were provided with 6.6 recommendations (range = 1-11). Survivors accurately recalled receiving 3.0 recommendations at one month post-intervention and 1.9 at six months. Survivors had adhered to an average of 1.3 recommendations by six-month follow-up. In total, 56% of participants reported that they did not adhere to any recommendations. By six-month follow-up, greater adherence to MDT recommendations was associated with having a history of a second cancer (B = 1.391; 95% confidence interval [CI], 0.686 to 2.097; p < 0.001) and reporting a greater level of worry about late effects (B = 1.381; 95% CI, 0.494 to 2.269; p = 0.002).Survivors reported sub-optimal levels of adherence and demonstrated limited recall of their healthcare recommendations. Effective communication of recommendations and clear discussion of barriers limiting adherence, coupled with late effects education, may be critical to ensure that survivors engage with their recommendations, to improve their quality of life and health outcomes.ACTRN12618000194268.

  View details for DOI 10.2147/JMDH.S363653

  View details for PubMedID 35983228

  View details for PubMedCentralID PMC9380825

• Psychosocial consequences of surviving cancer diagnosed and treated in childhood versus in adolescence/young adulthood: A call for clearer delineation between groups. Cancer Darlington, A. E., Wakefield, C. E., van Erp, L. M., van der Graaf, W. T., Cohn, R. J., Grootenhuis, M. A. 2022; 128 (14): 2690-2694

  View details for DOI 10.1002/cncr.34257

  View details for PubMedID 35579570

• Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer. PloS one Sansom-Daly, U. M., Wiener, L., Darlington, A. S., Poort, H., Rosenberg, A. R., Weaver, M. S., Schulte, F., Anazodo, A., Phillips, C., Sue, L., Herbert, A. R., Mack, J. W., Lindsay, T., Evans, H., Wakefield, C. E. 2022; 17 (7): e0270797

  Abstract

  For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.

  View details for DOI 10.1371/journal.pone.0270797

  View details for PubMedID 35802558

  View details for PubMedCentralID PMC9269432

• A systematic review of social support for siblings of children with neurodevelopmental disorders. Research in developmental disabilities Kirchhofer, S. M., Orm, S., Haukeland, Y. B., Fredriksen, T., Wakefield, C. E., Fjermestad, K. W. 2022; 126: 104234

  Abstract

  Social support is a protective factor for siblings of children with neurodevelopmental disorders.We reviewed studies on social support received by siblings of children with neurodevelopmental disorders.We conducted a pre-registered systematic review (CRD42020207686), searching PsycINFO, MEDLINE, Web of Science, and Scopus.Fifteen articles were eligible for the review, 13 of which used cross-sectional designs. Two studies investigated sibling social support after an intervention. Multiple variables were negatively related to social support (e.g., sibling depression, loneliness, stress). Variables that were positively related to social support included prosocial behavior, competence (academic, social, and activity-related), problem-focused coping, and family quality of life. Potential moderators of the relationship between social support and psychosocial adjustment included the type of disorder of the affected sibling and the type of social support provider. We conclude with an overview of the reliability and validity of the seven social support measurements used across the studies.Lower levels of social support are associated with more negative psychosocial adjustment among siblings of children with neurodevelopmental disorders. We encourage future researchers to further investigate ways to increase social support for siblings to improve outcomes.

  View details for DOI 10.1016/j.ridd.2022.104234

  View details for PubMedID 35468570

• Genetic Testing in the Pediatric Nephrology Clinic: Understanding Families' Experiences. Journal of pediatric genetics Nevin, S. M., McLoone, J., Wakefield, C. E., Kennedy, S. E., McCarthy, H. J. 2022; 11 (2): 117-125

  Abstract

  Genomics is rapidly being integrated into the routine care of children and families living with renal disease, principally as a diagnostic tool but also to direct therapy, identify at-risk relatives, and facilitate family planning. However, despite significant progress in understanding the genetic heterogeneity of inherited renal disease, the impact of genetic testing on parents and families of affected children is not well understood. This study aimed to investigate the experiences of families undergoing genetic testing, the psychosocial impact of receiving a genetic test result, and parent information and support needs. In-depth semistructured interviews were conducted with 26 parents of pediatric patients (<18 years of age) who had undergone genomic investigation for a suspected genetic renal disease at two tertiary pediatric nephrology services. Interviews were transcribed verbatim, coded, using NVivo software, and thematic analysis was undertaken. Key themes included emotional adjustment to a genetic diagnosis, the importance of parent-provider relationships, empowerment through social connection, and the value of family-centered care. Results highlighted the wide-ranging psychosocial impact of genetic testing on parents, as well as the importance of patient-support networks in enabling parents/families to cope and adapt. Targeted approaches to enhance communication of genetic information and the development of tailored resources to address parents' genetics and health service needs may lead to more satisfactory experiences of genetic testing.

  View details for DOI 10.1055/s-0040-1721439

  View details for PubMedID 35769952

  View details for PubMedCentralID PMC9236744

• The Perceived Impact of COVID-19 on the Mental Health Status of Adolescent and Young Adult Survivors of Childhood Cancer and the Development of a Knowledge Translation Tool to Support Their Information Needs. Frontiers in psychology Hou, S. H., Tran, A., Cho, S., Forbes, C., Forster, V. J., Stokoe, M., Allapitan, E., Wakefield, C. E., Wiener, L., Heathcote, L. C., Michel, G., Patterson, P., Reynolds, K., Schulte, F. S. 2022; 13: 867151

  Abstract

  Adolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2).Between May and June 2020, participants completed a cross-sectional online survey assessing their cancer history, current mental health status, and their COVID-19 information needs.Ninety-four participants (78 females, 13 males, 2 non-binary) with a mean age of 26.9 years (SD = 6.2) were included in the final sample. Participants reported residing from 10 countries and 94% identified as White. Nearly half of the participants (49%) described their mental health status as worse now than before the pandemic. Thirty-nine participants (41%) that indicated their current mental health status was tied to fears/worries about their past cancer and treatment experienced a higher level of anxiety and PTSS than those who did not report the same. Most participants (77%) had not received any information related to the potential risks of COVID-19 and expressed an interest in receiving this information. In response, an infographic detailing recommended strategies for coping with mental health problems in the pandemic, along with preliminary study findings, was developed.AYA survivors reporting their mental health status was linked to their past cancer experienced poorer mental health. There is a value to educating survivors on their potential health risks, but accounting for their perceived mental health vulnerabilities should be considered when disseminating knowledge. The use of an infographic is a unique contribution towards the development of innovative and personalized means of sharing health education to this vulnerable yet resilient group. This research on the mental health status of AYA survivors very early in the pandemic informs continued initiatives investigating the rapidly changing nature of how COVID-19 may impact AYA survivors today and in the future.

  View details for DOI 10.3389/fpsyg.2022.867151

  View details for PubMedID 35846688

  View details for PubMedCentralID PMC9285488

• Long-term care for people treated for cancer during childhood and adolescence. Lancet (London, England) Tonorezos, E. S., Cohn, R. J., Glaser, A. W., Lewin, J., Poon, E., Wakefield, C. E., Oeffinger, K. C. 2022; 399 (10334): 1561-1572

  Abstract

  Worldwide advances in treatment and supportive care for children and adolescents with cancer have resulted in a increasing population of survivors growing into adulthood. Yet, this population is at very high risk of late occurring health problems, including significant morbidity and early mortality. Unique barriers to high-quality care for this group include knowledge gaps among both providers and survivors as well as fragmented health-care delivery during the transition from paediatric to adult care settings. Survivors of childhood and adolescent cancer are at risk for a range of late-occuring side-effects from treatment, including cardiac, endocrine, pulmonary, fertility, renal, psychological, cognitive, and socio-developmental impairments. Care coordination and transition to adult care are substantial challenges, but can be empowering for survivors and improve outcomes, and could be facilitated by clear, effective communication and support for self-management. Resources for adult clinical care teams and primary care providers include late-effects surveillance guidelines and web-based support services.

  View details for DOI 10.1016/S0140-6736(22)00460-3

  View details for PubMedID 35430023

  View details for PubMedCentralID PMC9082556

• Social Anxiety Symptoms in Survivors of Childhood and Adolescent Cancer. Journal of adolescent and young adult oncology Schilstra, C. E., Fardell, J. E., Ellis, S. J., Jones, K. M., Anazodo, A. C., Trahair, T. N., Lah, S., Cohn, R. J., Wakefield, C. E., Sansom-Daly, U. M. 2022; 11 (2): 129-137

  Abstract

  Purpose: Adolescent and young adult (AYA) cancer survivors may be at risk of developing symptoms of social anxiety disorder (SAD) due to disruptions in social participation and functioning following a cancer diagnosis. This study aimed to explore (1) the proportion of Australian AYA-aged survivors of childhood and adolescent cancer who experience symptoms of SAD, (2) how symptoms of SAD are described by survivors as affecting their daily social functioning. Methods: A mixed-methods cross-sectional design was employed, inviting survivors, aged 13-25 years, who had completed treatment between one and ten years ago. Survivors completed a paper-based questionnaire, containing validated measures of SAD, and an optional semistructured interview assessing current social functioning and social anxiety. Results: Twenty-seven survivors aged 13-25 years participated (M = 19.15, 51.9% male, and 7 years post-treatment). Nine (33%) participants reported clinically significant symptoms of SAD. In interviews, survivors reported worries about how others perceived them and fears around meeting new people. Survivors described that this impacted their daily social functioning, leading them to avoid, or endure with distress, feared social situations. Conclusion: This study shows that clinically significant social anxiety may be a concern for a subset of survivors of childhood/adolescent cancer. Identifying which young people are at risk of SAD after cancer and how best to support this vulnerable cohort is critical.

  View details for DOI 10.1089/jayao.2021.0050

  View details for PubMedID 34252287

• Recommendations for the surveillance of mental health problems in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. The Lancet. Oncology Marchak, J. G., Christen, S., Mulder, R. L., Baust, K., Blom, J. M., Brinkman, T. M., Elens, I., Harju, E., Kadan-Lottick, N. S., Khor, J. W., Lemiere, J., Recklitis, C. J., Wakefield, C. E., Wiener, L., Constine, L. S., Hudson, M. M., Kremer, L. C., Skinner, R., Vetsch, J., Lee, J. L., Michel, G. 2022; 23 (4): e184-e196

  Abstract

  Survivors of childhood, adolescent, and young adult (diagnosed when <25 years of age) cancer are at risk of mental health problems. The aim of this clinical practice guideline is to harmonise international recommendations for mental health surveillance in survivors of childhood, adolescent, and young adult cancer. This guideline was developed by a multidisciplinary panel of experts under the sponsorship of the International Guideline Harmonization Group. We evaluated concordance among existing survivorship clinical practice guidelines and conducted a systematic review following evidence-based methods. Of 7249 studies identified, 76 articles from 12 countries met the inclusion criteria. Recommendations were formulated on the basis of identified evidence in combination with clinical considerations. This international clinical practice guideline strongly recommends mental health surveillance for all survivors of childhood, adolescent, and young adult cancers at every follow-up visit and prompt referral to mental health specialists when problems are identified. Overall, the recommendations reflect the necessity of mental health surveillance as part of comprehensive survivor-focused health care.

  View details for DOI 10.1016/S1470-2045(21)00750-6

  View details for PubMedID 35358467

  View details for PubMedCentralID PMC9639707

• School academic performance of children hospitalised with a chronic condition. Archives of disease in childhood Hu, N., Fardell, J., Wakefield, C. E., Marshall, G. M., Bell, J. C., Nassar, N., Lingam, R. 2022; 107 (3): 289-296

  Abstract

  To examine academic outcomes among children hospitalised with a chronic health condition.Population-level birth cohort.New South Wales, Australia.397 169 children born 2000-2006 followed up to 2014.Hospitalisations with a chronic condition.Academic underperformance was identified as 'below the national minimum standard' (BNMS) in five literacy/numeracy domains using the national assessment (National Assessment Program-Literacy and Numeracy) data. Multivariable logistic regression assessed the adjusted ORs (aORs) of children performing BNMS in each domain at each grade (grades 3, 5 and 7, respectively).Of children hospitalised with a chronic condition prior to National Assessment Program-Literacy and Numeracy (NAPLAN) (16%-18%), 9%-12% missed ≥1 test, with a maximum of 37% of those hospitalised ≥7 times, compared with 4%-5% of children not hospitalised. Excluding children who missed a NAPLAN test, more children hospitalised with a chronic condition performed BNMS across all domains and grades, compared with children not hospitalised (eg, for BNMS in reading at grade 3: n=2588, aOR 1.35 (95% CI 1.28 to 1.42); for BNMS in numeracy at grade 3: n=2619, aOR 1.51 (95% CI 1.43 to 1.59)). Increasing frequency and bed-days of hospitalisation were associated with 2-3 fold increased odds of performing BNMS across all domains and grades. Children hospitalised with mental health/behavioural conditions had the highest odds of performing BNMS across all domains at each grade.Children hospitalised with a chronic condition underperform academically across literacy/numeracy domains at each school grade. Health and educational supports are needed to improve these children's academic outcomes.

  View details for DOI 10.1136/archdischild-2020-321285

  View details for PubMedID 34475105

  View details for PubMedCentralID PMC8862027

• Piloting positive psychology resources for caregivers of a child with a genetic developmental and epileptic encephalopathy. European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society Nevin, S. M., Wakefield, C. E., Le Marne, F., Beavis, E., Macintosh, R., Sachdev, R., Bye, A., Palmer, E. E., Nunn, K. 2022; 37: 129-138

  Abstract

  Developmental and epileptic encephalopathies (DEEs) are chronic and life-threatening conditions, frequently with a genetic basis and infantile-onset. Caregivers often experience enduring distress adapting to their child's diagnosis and report a deficit of accessible psychological supports. We aimed to pilot a novel, empirically-driven suite of audio-visual positive psychology resources tailored for caregivers of children with a DEE, called 'Finding a Way'.We recruited caregivers through two paediatric hospital databases, and we also shared an invitation to the online questionnaire via genetic epilepsy advocacy organisations. The online questionnaire included a combination of validated, purpose-designed, and open-ended questions to assess the acceptability, relevance, and emotional impact of the resources among caregivers.167 caregivers from 18 countries reviewed the resources, with 56 caregivers completing over 85% of the evaluation. Caregivers rated the resources as highly acceptable and relevant to their experiences. In both the quantitative and qualitative data, caregivers reported that the resources normalised their emotional experiences and provided helpful suggestions about managing their personal relationships, seeking support and accepting help from others. Frequently reported emotional responses after viewing the resources included feeling "comforted", "hopeful", "connected" and "reassured". Suggestions for improvement included, expanding the suite of resources and embedding the resources with links to specialised psychological services.'Finding a Way' is a novel codesigned suite of audio-visual positive psychology resources tailored for caregivers of children with DEEs. Our results suggest that 'Finding a Way' is acceptable to caregivers and may contribute towards enhanced emotional adaptation and coping.

  View details for DOI 10.1016/j.ejpn.2022.01.022

  View details for PubMedID 35240556

• Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of life. BMJ open respiratory research Kelada, L., Wakefield, C., Vidic, N., Armstrong, D. S., Bennetts, B., Boggs, K., Christodoulou, J., Harrison, J., Ho, G., Kapur, N., Lindsey-Temple, S., McDonald, T., Mowat, D., Schultz, A., Selvadurai, H., Tai, A., Jaffe, A. 2022; 9 (1)

  Abstract

  Research is needed to determine best practice for genomic testing in the context of child interstitial or diffuse lung disease (chILD). We explored parent's and child's health-related quality of life (HRQoL), parents' perceived understanding of a genomic testing study, satisfaction with information and the study and decisional regret to undertake genomic testing.Parents of children with diagnosed or suspected chILD who were enrolled in a genomic sequencing study were invited to complete questionnaires pretesting (T1) and after receiving the result (T2).Parents' (T1, n=19; T2, n=17) HRQoL was lower than population norms. Study satisfaction (T1) and perceived understanding (T2) were positively correlated (rs=0.68, p=0.014). Satisfaction with information (T1 and T2) and decisional regret (T2) were negatively correlated (T1 rs=-0.71, p=0.01; T2 rs=-0.56, p=0.03). Parents reported wanting more frequent communication with staff throughout the genomic sequencing study, and greater information about the confidentiality of test results.Understanding of genomic testing, satisfaction with information and participation and decisional regret are inter-related. Pretest consultations are important and can allow researchers to explain confidentiality of data and the variable turnaround times for receiving a test result. Staff can also update parents when there will be delays to receiving a result.

  View details for DOI 10.1136/bmjresp-2021-001139

  View details for PubMedID 35190460

  View details for PubMedCentralID PMC8862491

• Poor diet quality and adverse eating behaviors in young survivors of childhood cancer. Pediatric blood & cancer Fleming, C. A., Murphy-Alford, A. J., Cohen, J., Fleming, M. R., Wakefield, C. E., Naumann, F. 2022; 69 (1): e29408

  Abstract

  The long-term impact of childhood cancer treatment on dietary intake is likely to be complex, and the length of time dietary behaviors are affected after childhood cancer treatment is unknown.The aim of this study was to determine the diet quality in childhood cancer survivors recently off treatment and explore possible contributing factors that may affect diet quality in this population.Participants were 65 parents and/or carers of childhood cancer survivors (CCS) (aged 2-18 years), recently off treatment, and 81 age-matched controls. Participants completed two self-administered dietary intake and eating behavior questionnaires. Study data were explored to determine between group differences, bivariate analysis using Spearman correlations was used to determine the relationship between diet quality and identified variables, and hierarchical cluster analysis was completed to characterize specific variables into clusters.One hundred and forty-six parents of children aged 2-18 years completed the study (65 parents of CCS and 81 control). CCS had a significantly poorer diet quality score than the age-matched controls (32.25 vs 34.83, P = 0.028). CCS had significantly higher parent-reported rates of "picky eating" behavior than the control group (2.31 vs 1.91; P = 0.044). Factors such as picky eating, emotional overeating, and body mass index z-score might drive diet quality in survivors.CCS were found to have poorer diet quality and more likely to have parents report picky eating behaviors. The outcomes highlighted the need for a tailored intervention aimed at improving healthy eating behaviors in CCS after treatment for cancer.

  View details for DOI 10.1002/pbc.29408

  View details for PubMedID 34773426

• Inequality in early childhood chronic health conditions requiring hospitalisation: A data linkage study of health service utilisation and costs. Paediatric and perinatal epidemiology Callander, E. J., Bull, C., Lain, S., Wakefield, C. E., Lingam, R., Marshall, G. M., Wake, M., Nassar, N. 2022; 36 (1): 156-166

  Abstract

  The cost of socioeconomic inequality in health service use among Australian children with chronic health conditions is poorly understood.To quantify the cost of socioeconomic inequality in health service use among Australian children with chronic health conditions.Cohort study using a whole-of-population linked administrative data for all births in Queensland, Australia, between July 2015 and July 2018. Socioeconomic status was defined by an areas-based measure, grouping children into quintiles from most disadvantaged (Q1) to least disadvantaged (Q5) based on their postcode at birth. Study outcomes included health service utilisation (inpatient, emergency department, outpatient, general practitioner, specialist, pathology and diagnostic imaging services) and healthcare costs.Of the 238,600 children included in the analysis, 10.4% had at least one chronic health condition. Children with chronic health conditions in Q1 had higher rates of inpatient (6.6, 95% confidence interval [CI] 6.4, 6.7), emergency department (7.2, 95% CI 7.0, 7.5) and outpatient (20.3, 95% CI 19.4, 21.3) service use compared to children with chronic health conditions in Q5. They also had lower rates of general practitioner (37.5, 95% CI 36.7, 38.4), specialist (8.9, 95% CI 8.5, 9.3), pathology (10.7, 95% CI 10.2, 11.3), and diagnostic imaging (4.3, 95% CI 4.2,4.5) service use. Children with any chronic health condition in Q1 incurred lower median out-of-pocket fees than children in Q5 ($0 vs $741, respectively), lower median Medicare funding ($2710, vs $3408, respectively), and higher median public hospital funding ($31, 052 vs $23, 017, respectively).Children of most disadvantage are more likely to access public hospital provided services, which are accessible free of charge to patients. These children are less likely to access general practitioner, specialist, pathology and diagnostic imaging services; all of which are critical to the ongoing management of chronic health conditions, but often attract an out-of-pocket fee.

  View details for DOI 10.1111/ppe.12818

  View details for PubMedID 34806212

• Psychological outcomes, coping and illness perceptions among parents of children with neurological disorders. Psychology & health Kelada, L., Wakefield, C. E., Muppavaram, N., Lingappa, L., Chittem, M. 2021; 36 (12): 1480-1496

  Abstract

  To assess the Common Sense Model among parents of children with neurological disorders, by determining the prevalence of symptoms of anxiety and depression, and how illness perceptions relate to symptoms of anxiety and depression both directly, and indirectly via coping.205 parents of children with neurological disorders in Hyderabad, India completed questionnaires.Hospital Anxiety and Depression Scale, Brief Illness Perception Questionnaire and Coping Health Inventory for Parents. We used multiple regressions and PROCESS for SPSS to assess direct and indirect relationships.Mild to severe symptoms of anxiety (41.0%) and depression (39.5%) were common. Symptoms of anxiety and/or depression were related to perceived treatment control over the illness, perceived understanding of the illness, perceived personal control over the illness (anxiety only), and perceived timeline of the illness (depression only). The coping strategy 'maintaining social support' mediated the relationship between symptoms of depression and four illness perceptions: perceived consequences (95%CI=.03,-.21), timeline (95%CI=.01,-.25), perceived personal control (95%CI=.02-.24), and treatment control (95%CI=.01-.34).Our findings have implications for education interventions to improve community attitudes of child neurological disorders. Such interventions may allow families' social networks to provide more support to parents, which could aid parents' coping strategies.

  View details for DOI 10.1080/08870446.2020.1859113

  View details for PubMedID 33320704

• Long-term health-related quality of life in young childhood cancer survivors and their parents. Pediatric blood & cancer Fardell, J. E., Wakefield, C. E., De Abreu Lourenco, R., Signorelli, C., McCarthy, M., McLoone, J., Osborn, M., Gabriel, M., Anazodo, A., Alvaro, F., Lockwood, L., Walwyn, T., Skeen, J., Tillemans, R., Cohn, R. J. 2021; 68 (12): e29398

  Abstract

  Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL.We recruited parents of survivors who were currently <16 years, and >5 years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects.One hundred eighty-two parents of survivors (mean age = 12.4 years old and 9.7 years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p < .009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents' average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p < .0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL.Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors' late effects and improving parents' resilience through survivorship may improve HRQoL in long-term survivorship.

  View details for DOI 10.1002/pbc.29398

  View details for PubMedID 34606168

• How Are Families Faring? Perceived Family Functioning Among Adolescent and Young Adult Cancer Survivors in Comparison to Their Peers. Journal of adolescent and young adult oncology Kamaladasa, D. S., Sansom-Daly, U. M., Hetherington, K., McGill, B. C., Ellis, S. J., Kelada, L., Donoghoe, M. W., Evans, H., Anazodo, A., Patterson, P., Cohn, R. J., Wakefield, C. E. 2021; 10 (6): 711-719

  Abstract

  Purpose: Adolescent and young adult (AYA) cancer survivors' families can face ongoing challenges into survivorship. Families' adjustment and functioning as a unit can subsequently impact AYAs' mental health and quality of life. This study examined AYA cancer survivors' perceived family functioning, compared with their peers, and investigated factors associated with family functioning. Methods: Eligible participants were aged between 15 and 40 years, fluent in English, and cancer survivors who had completed treatment. AYA cancer survivors were recruited from hospital clinics, and the comparison group from an affiliated university campus. Participants completed the McMaster Family Assessment Device, Kidcope, and the Depression, Anxiety and Stress Scale-Short Form. We analyzed between-group differences in family functioning using multivariate analysis of covariance and used partial correlations to investigate associations between demographic cancer-related psychological coping variables and family functioning. Results: Ninety-three AYA cancer survivors and 141 comparison peers participated (ages: 15-32 years). AYA cancer survivors reported significantly better family functioning (p = 0.029), lower depression (p = 0.016), and anxiety symptoms (p = 0.008) compared with the comparison group. Approximately one-third of AYA survivors (34.4%) reported clinically significant maladaptive family functioning; however, this was more prevalent in the comparison group (50.4%). After adjusting for covariates, poorer family functioning was associated with AYA survivors using more avoidant escape-oriented coping strategies (p = 0.010). Conclusions: Our cancer survivor cohort reported better family functioning and psychological outcomes compared with their peers. Interventions targeting avoidant coping behaviors may support improved family functioning in some survivors. Further research disentangling the relationship between coping mechanisms and family functioning among AYA cancer survivors is needed.

  View details for DOI 10.1089/jayao.2020.0215

  View details for PubMedID 33960837

• Providing Psychological Support to Parents of Childhood Cancer Survivors: 'Cascade' Intervention Trial Results and Lessons for the Future. Cancers Wakefield, C. E., Sansom-Daly, U. M., McGill, B. C., Hetherington, K., Ellis, S. J., Robertson, E. G., Donoghoe, M. W., McCarthy, M., Kelada, L., Girgis, A., King, M., Grootenhuis, M., Anazodo, A., Patterson, P., Lowe, C., Dalla-Pozza, L., Miles, G., Cohn, R. J. 2021; 13 (22)

  Abstract

  We conducted a three-armed trial to assess Cascade, a four-module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer-support group), or a waitlist. The primary outcome was parents' health-related quality of life (PedsQL-Family Impact/EQ-5D-5L) six months post-intervention. Parents also reported their anxiety/depression, parenting self-agency, fear of recurrence, health service and psychotropic medication use, engagement in productive activities, confidence to use, and actual use of, CBT skills, and their child's quality of life. Seventy-six parents opted in; 56 commenced the trial. Cascade achieved good parent engagement and most Cascade parents were satisfied and reported benefits. Some parents expressed concerns about the time burden and the group format. Most outcomes did not differ across trial arms. Cascade parents felt more confident to use more CBT skills than peer-support and waitlisted parents, but this did not lead to more use of CBT. Cascade parents reported lower psychosocial health scores for their child than waitlisted parents. Cascade parents' health service use, psychotropic medication use, and days engaged in productive activities did not improve, despite some improvements in waitlisted parents. Our trial was difficult to implement, but participants were largely satisfied. Cascade did not improve most outcomes, possibly because many parents were functioning well pre-enrolment. We used these findings to improve Cascade and will trial the new version in future.

  View details for DOI 10.3390/cancers13225597

  View details for PubMedID 34830752

  View details for PubMedCentralID PMC8615912

• A sociology of precision-in-practice: The affective and temporal complexities of everyday clinical care. Sociology of health & illness Kenny, K., Broom, A., Page, A., Prainsack, B., Wakefield, C. E., Itchins, M., Lwin, Z., Khasraw, M. 2021; 43 (9): 2178-2195

  Abstract

  The idea of 'precision medicine', which has gained increasing traction since the early 2000s, is now ubiquitous in health and medicine. Though varied in its implementation across fields, precision medicine has raised hopes of revolutionary treatments and has spurred the proliferation of novel therapeutics, the alteration of professional trajectories and various reconfigurations of health/care. Nowhere is the promise of precision medicine more apparent, nor further institutionalised, than in the field of oncology. While the transformative potential of precision medicine is widely taken for granted, there remains scant attention to how it is being experienced at the coalface of care. Here, drawing on the perspectives of 54 cancer care professionals gleaned through eight focus group discussions in two hospitals in Australia, we explore clinicians' experiences of the day-to-day dynamics of precision-in-practice. We illustrate some of the affective and temporal complexities, analysed here under the rubrics of enchantment, acceleration and distraction that are emerging alongside the uptake of precision medicine in the field of oncology. We argue that these complexities, and their dis/continuities with earlier iterations of cancer care, demonstrate the need for sociological analyses of precision medicine as it is being implemented in practice and its varied effects on 'routine' care.

  View details for DOI 10.1111/1467-9566.13389

  View details for PubMedID 34843108

  View details for PubMedCentralID PMC9299761

• Variables associated with grief and personal growth following the death of a child from cancer: A mixed method analysis. Death studies Donovan, L. A., Wakefield, C. E., Russell, V., Fardell, J., Mallitt, K. A., Hetherington, K., Cohn, R. 2021; 45 (9): 702-713

  Abstract

  This mixed method study explored parent and child characteristics that impact grief and personal growth in parents (n = 119) after a child dies from cancer in Australia. Medical components of a child's cancer care including radiation treatment, referral to palliative care, and location of death had a significant impact on levels of grief. Parents' gender, religious affiliation, and education level had a significant impact on levels of personal growth. This study further enhances our understanding of the impact of specific parent and child characteristics throughout a child's cancer treatment and end of life that may influence their families' experience of bereavement.

  View details for DOI 10.1080/07481187.2019.1682087

  View details for PubMedID 31656129

• Patterns and Predictors of Healthcare Use among Adolescent and Young Adult Cancer Survivors versus a Community Comparison Group. Cancers Sansom-Daly, U. M., Wakefield, C. E., Signorelli, C., Donoghoe, M. W., Anazodo, A., Sawyer, S. M., Osborn, M., Viney, R., Daniell, N., Faasse, K., Cohn, R. J. 2021; 13 (21)

  Abstract

  Healthcare use (HCU) during survivorship can mitigate adolescent and young adult (AYA) cancer survivors' (aged 15-39 years) risk of medical and psychosocial late effects, but this is understudied. We surveyed 93 Australian AYA post-treatment cancer survivors (Mage = 22.0 years, SD = 3.5; 55.9% female) and a comparison sample of 183 non-matched AYAs (Mage = 19.7, SD = 3.2; 70.5% female) on their HCU, medication use, depression/anxiety, and general functioning. Relative to our comparison AYAs, a higher proportion of our survivor group reported medical HCU (community-delivered: 65.6% versus 47.0%, p = 0.003; hospital-delivered: 31.2% versus 20.3%, p = 0.044) and mental HCU (53.8% vs. 23.5%; p < 0.0001) in the past six months. A higher proportion of our survivors reported taking medications within the past six months than our comparison AYAs (61.3% vs. 42.1%, p = 0.003) and taking more types (p < 0.001). Vitamin/supplement use was most common followed by psychotropic medications. Our survivor group reported lower depression (p = 0.001) and anxiety symptoms (p = 0.003), but similar work/study participation (p = 0.767) to our comparison AYAs. Across groups, psychological distress was associated with higher mental HCU (p = 0.001). Among survivors, those who were female, diagnosed with brain/solid tumors and who had finished treatment more recently reported greater HCU. Future research should establish whether this level of HCU meets AYAs' survivorship needs.

  View details for DOI 10.3390/cancers13215270

  View details for PubMedID 34771435

  View details for PubMedCentralID PMC8582416

• Interactive video games to reduce paediatric procedural pain and anxiety: a systematic review and meta-analysis. British journal of anaesthesia Sajeev, M. F., Kelada, L., Yahya Nur, A. B., Wakefield, C. E., Wewege, M. A., Karpelowsky, J., Akimana, B., Darlington, A. S., Signorelli, C. 2021; 127 (4): 608-619

  Abstract

  Procedural pain and anxiety in children can be poorly controlled, leading to significant short- and long-term sequelae, such as longer procedure times or future healthcare avoidance. Caregiver anxiety can exacerbate these effects. We aimed to evaluate the effect of interactive video game interventions on children's procedural pain and anxiety, including the effect of different types of video games on those outcomes.We conducted a systematic review and meta-analysis of the effectiveness of interactive video games compared with standard care in children (0-18 yr) undergoing painful procedures. We searched the databases MEDLINE, Embase, and PsycINFO. We conducted random-effects meta-analysis using 'R' of children's procedural pain and anxiety and caregivers' anxiety.Of 2185 studies screened, 36 were eligible (n=3406 patients). Studies commonly involved venous access (33%) or day surgery (31%). Thirty-four studies were eligible for meta-analyses. Interactive video games appear to reduce children's procedural pain (standardised mean difference [SMD]=-0.43; 95% confidence interval [CI]: -0.67 to -0.20), anxiety (SMD=0.61; 95% CI: -0.88 to -0.34), and caregivers' procedural anxiety (SMD=-0.31; 95% CI: -0.58 to -0.04). We observed no difference between preparatory and distracting games, or between virtual reality and non-virtual reality games. We also observed no difference between interactive video games compared with standard care for most medical outcomes (e.g. procedure length), except a reduced need for restraint. Studies reported minimal adverse effects and typically had high intervention acceptability and satisfaction.Our findings support introducing easily available video games, such as distraction-based conventional video games, into routine practice to minimise paediatric procedural pain and child/caregiver anxiety.

  View details for DOI 10.1016/j.bja.2021.06.039

  View details for PubMedID 34340838

• "This Is the First Time I've Talked About This": Considerations When Conducting Qualitative Research Interviews with Adolescents and Young Adults with Cancer. Journal of adolescent and young adult oncology Davies, J. P., McGill, B. C., Sansom-Daly, U. M., Wakefield, C. E., Kelly, D. M. 2021; 10 (5): 540-548

  Abstract

  Qualitative research is a useful and important way to describe and analyze the experiences of adolescents and young adults (AYAs) with cancer. However, undertaking qualitative research with AYAs living with, or beyond, a cancer diagnosis requires careful planning and a well-informed approach for participants with a high level of vulnerability and who are at a crucial stage developmentally. This article reflects on the challenges of including AYAs with cancer between the ages of 16 and 25 years in qualitative research. By drawing on each author's own experiences of engaging in qualitative research interviews with AYAs with cancer, the article provides suggestions regarding how best to manage challenges and yield valuable data describing their experiences. Insights that are shared between qualitative researchers in this field may assist in preparing for the challenges posed by conducting qualitative research with this group and may help researchers to manage this activity successfully.

  View details for DOI 10.1089/jayao.2020.0122

  View details for PubMedID 33393866

• Health service and medication use of parents of childhood cancer survivors: a controlled comparison study. Acta oncologica (Stockholm, Sweden) Hsu, J., Sansom-Daly, U. M., Hetherington, K., Ellis, S. J., Donoghoe, M. W., Cohn, R. J., Zentella-Tusie, A., Wakefield, C. E. 2021; 60 (10): 1325-1334

  Abstract

  Parents of childhood cancer survivors may be vulnerable to experiencing poor health outcomes, but little is known about how these parents use healthcare. This study investigated the nature and extent of survivors' parents' healthcare and medication use relative to a comparison group. We also examined whether demographic or cancer-related factors were related to healthcare use and whether healthcare use was associated with parents' general functioning.We conducted a cross-sectional study involving 55 parents of cancer survivors recruited through eight Australian hospitals, and 135 parents of children without a cancer diagnosis, through an online recruitment platform. Participants responded to a questionnaire assessing their health service usage, regular medications, general functioning (engagement activities including work/study) and anxiety and depression symptoms (using PROMIS short forms). We performed regression analysis to determine factors related to healthcare and medication use in parents of survivors.More parents of survivors reported accessing mental health services than comparison parents (56% vs. 33%, p=.003), mainly due to their use of social workers. Fewer parents of survivors reported accessing other community health services, particularly general practitioners (51% vs. 78%, p<.001). Having a child survivor who was male was associated with greater use of community health services (B= -0.67, p=.008). No other demographic or cancer-related variables were associated with health service use. Health service use was not associated with general functioning, but greater medication use was associated with higher anxiety scores (B = 1.41, p=.008).Parents of childhood cancer survivors showed different patterns of health service use relative to comparison parents, but the extent of their use was not significantly linked with demographic or cancer-related variables. Comprehensive assessment of parents' needs in clinical encounters remains vital to identify and appropriately match support needs with available services.

  View details for DOI 10.1080/0284186X.2021.1955968

  View details for PubMedID 34308777

• Cancer care disruption and reorganisation during the COVID-19 pandemic in Australia: A patient, carer and healthcare worker perspective. PloS one Edge, R., Meyers, J., Tiernan, G., Li, Z., Schiavuzzi, A., Chan, P., Vassallo, A., Morrow, A., Mazariego, C., Wakefield, C. E., Canfell, K., Taylor, N. 2021; 16 (9): e0257420

  Abstract

  The COVID-19 pandemic has dramatically impacted cancer care worldwide. Disruptions have been seen across all facets of care. While the long-term impact of COVID-19 remains unclear, the immediate impacts on patients, their carers and the healthcare workforce are increasingly evident. This study describes disruptions and reorganisation of cancer services in Australia since the onset of COVID-19, from the perspectives of people affected by cancer and healthcare workers. Two separate online cross-sectional surveys were completed by: a) cancer patients, survivors, carers, family members or friends (n = 852) and b) healthcare workers (n = 150). Descriptive analyses of quantitative survey data were conducted, followed by inductive thematic content analyses of qualitative survey responses relating to cancer care disruption and perceptions of telehealth. Overall, 42% of cancer patients and survivors reported experiencing some level of care disruption. A further 43% of healthcare workers reported atypical delays in delivering cancer care, and 50% agreed that patient access to research and clinical trials had been reduced. Almost three quarters (73%) of patients and carers reported using telehealth following the onset of COVID-19, with high overall satisfaction. However, gaps were identified in provision of psychological support and 20% of participants reported that they were unlikely to use telehealth again. The reorganisation of cancer care increased the psychological and practical burden on carers, with hospital visitation restrictions and appointment changes reducing their ability to provide essential support. COVID-19 has exacerbated a stressful and uncertain time for people affected by cancer and healthcare workers. Service reconfiguration and the adoption of telehealth have been essential adaptations for the pandemic response, offering long-term value. However, our findings highlight the need to better integrate psychosocial support and the important role of carers into evolving pandemic response measures. Learnings from this study could inform service improvements that would benefit patients and carers longer-term.

  View details for DOI 10.1371/journal.pone.0257420

  View details for PubMedID 34534231

  View details for PubMedCentralID PMC8448370

• Accuracy of perceived physical activity and fitness levels among childhood cancer survivors. Pediatric blood & cancer Ha, L., Mizrahi, D., Cohn, R. J., Simar, D., Wakefield, C. E., Signorelli, C. 2021; 68 (9): e29134

  Abstract

  Childhood cancer survivors do not engage in sufficient physical activity and have low fitness levels. Perceived physical activity and fitness levels may influence survivors' engagement in health behaviours. We aimed to investigate survivors' perceptions of physical activity and fitness levels and identify how accurate their perceptions were. We further explored survivors' attitudes toward physical activity, including perceived importance and desire to increase activity levels.We recruited 116 childhood cancer survivors (8-18 years) and assessed their perceived physical activity levels using a questionnaire and the Godin's Leisure Score Index. Accuracy of their perceptions was established by comparing their perceived physical activity levels with the recommended guidelines. Survivors reported their perceived fitness levels using the International Fitness Scale. We compared survivors' perceptions with their performance on the 6-minute walk test using weighted Cohen's kappa to determine interrater agreement between perceived and objectively measured fitness.Most survivors did not meet the physical activity guidelines (<420 min/week). One-third incorrectly perceived whether their self-reported physical activity levels were appropriate (84% underestimated, while 16% overestimated). Survivors had average fitness and were inaccurate at perceiving their fitness level. Survivors highly valued the importance of being able to do physical activity, and 89% reported a desire to increase their physical activity.Our results reveal that many survivors are not accurate when perceiving their physical activity and fitness levels. Emphasising the need for objective fitness assessments, and patient education in clinical practice may support survivors to accurately perceive their physical activity and fitness levels, thus improving health behaviours.

  View details for DOI 10.1002/pbc.29134

  View details for PubMedID 34133073

• Feasibility, acceptability and appropriateness of a reproductive patient reported outcome measure for cancer survivors. PloS one Gerstl, B., Signorelli, C., Wakefield, C. E., D'Souza, C., Deans, R., Vaishnav, T., Johnston, K., Neville, K. A., Cohn, R. J., Anazodo, A. 2021; 16 (8): e0256497

  Abstract

  Cancer patients can experience a number of reproductive complications as a result of cancer treatment and may benefit from reproductive preventative health strategies. A Reproductive Survivorship Patient Reported Outcome Measure (RS-PROM) is not currently available but could assist patients address reproductive concerns.To develop and test the acceptability, feasibility and appropriateness of a RS-PROM tool to be used to assess reproductive needs of cancer survivors aged 18-45 years.We reviewed the outcomes of a recently published audit of reproductive care provided in our cancer survivorship clinic to identify gaps in current service provided and used this along with available validated reproductive measures, to develop this pilot RS-PROM. Survivors aged 18-45 years either attending the SCH survivorship clinic over a 1-year period or participants on the Australasian Oncofertility Registry (AOFR) who had agreed to be contacted for future research studies were asked to complete the RS-PROM and a questionnaire on the acceptability, feasibility and appropriateness of content included.One-hundred and fifty patients participated (61.3% females). Median age at cancer diagnosis was 24.5 years (range: 2-45 years). Eighty percent of participants reported the length of the RS-PROM was "just right", 92% agreed they would not mind completing the RS-PROM and 92.7% were willing to answer all questions, with 97% agreeing that the RS-PROM would be an important tool in addressing difficult sexual/reproductive topics concerning with healthcare professionals.The large majority of survivors participating in our pilot study found the RS-PROM to be an acceptable, feasible and useful tool to assist discussions of their sexual and reproductive health concerns and experiences with their clinical team.

  View details for DOI 10.1371/journal.pone.0256497

  View details for PubMedID 34449779

  View details for PubMedCentralID PMC8396734

• Parents' experiences of postmortem tumor donation for high-grade gliomas: benefits and suggested improvements. Neuro-oncology advances Robertson, E. G., Wakefield, C. E., Tsoli, M., Kellie, S. J., Alvaro, F., Gifford, A. J., Weber, M. A., Rodriguez, M., Kirby, M., Ziegler, D. S. 2021; 3 (1): vdab087

  Abstract

  Pediatric high-grade glioma is a devastating diagnosis. There has been no improvement in outcomes for several decades, with few children surviving 2 years postdiagnosis. Research progress has been hampered by a lack of tumor samples, which can be used to develop and test novel therapies. Postmortem tumor donations are therefore a valuable opportunity to collect tissue. In this study, we explored Australian parents' experiences of donating their child's tumor for research after their child had died.We collected qualitative data from 11 bereaved parents who consented to donate samples of their child's high-grade glioma for research postmortem. We asked parents about their perceived benefits/burdens of the autopsy, recommendations for improving consent discussions, and decision regret.Parents hoped that their donation would help to find a cure for future children with high-grade glioma. They described feeling comforted knowing that their child's suffering may help others. Some parents also felt that the donation would help them better understand their child's tumor. Although some parents described discomfort about procedures leading up to the autopsy, parents reported minimal regret regarding their decision to donate their child's tumor. Parents provided recommendations to improve consent discussions, such as providing more information about the autopsy logistics and why the donation was needed.Parents consented to autopsy for altruistic reasons, although donation may also assist parents in their grieving. There is a strong need to improve access to tumor donations for any family who wishes to donate.

  View details for DOI 10.1093/noajnl/vdab087

  View details for PubMedID 34458732

  View details for PubMedCentralID PMC8386242

• The lived experience of children and adolescents with cancer. Australian journal of general practice McLoone, J., Wakefield, C. E., Sansom-Daly, U. M., Thornton-Benko, E., Govender, D., Gabriel, M., Walwyn, T., Signorelli, C., Johnston, K., Cohn, R. J. 2021; 50 (8): 545-549

  Abstract

  The lived experience of children and adolescents diagnosed with cancer differs greatly from that of the adult cancer patient. A diagnosis of cancer disrupts almost every developmental life stage and continues to affect the child, and potentially their whole family, throughout adulthood.While it is important to recognise the potential for post-traumatic growth, a considerable proportion of children and adolescents will experience poorer psychological, social, educational and quality-of-life outcomes. Parents, particularly mothers, have been shown to experience levels of post-traumatic distress even greater than that of survivors. As such, there exists a critical need to provide family-centred support from diagnosis through to long-term survivorship or bereavement.Ongoing surveillance, proactive management of chronic health conditions, and health behaviour education are critical to survivors' lifelong wellbeing and can be facilitated locally by general practitioners with support from tertiary healthcare teams in a shared-care arrangement.

  View details for DOI 10.31128/AJGP-04-21-5945

  View details for PubMedID 34333569

• "We Have to Be Strong Ourselves": Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer. International journal of environmental research and public health Bell, L., Anderson, K., Girgis, A., Aoun, S., Cunningham, J., Wakefield, C. E., Shahid, S., Smith, A. B., Diaz, A., Lindsay, D., Masa, A., Garvey, G. 2021; 18 (14)

  Abstract

  Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers' needs: managing multiple responsibilities; maintaining the carer's own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

  View details for DOI 10.3390/ijerph18147281

  View details for PubMedID 34299731

  View details for PubMedCentralID PMC8303635

• Feasibility of Enhancing Parenting in Cancer, a psychoeducational intervention for communicating with children about parental cancer. Psycho-oncology Stafford, L., Sinclair, M., Rauch, P., Turner, J., Mann, G. B., Newman, L., Wakefield, C. E., Gilham, L., Mason, K., Cannell, J., Little, R., Schofield, P. 2021; 30 (7): 1172-1177

  View details for DOI 10.1002/pon.5655

  View details for PubMedID 33599354

• Evaluation of an In-Hospital Recreation Room for Hospitalised Children and Their Families. Journal of pediatric nursing Kelada, L., Wakefield, C. E., De Graves, S., Treadgold, C., Dumlao, G., Schaffer, M., O'Brien, T. 2021; 61: 191-198

  Abstract

  Many children's hospitals have established 'recreation rooms' to help reduce distress among hospitalised children and families. We investigated recreation rooms in two Australian children's hospitals to determine: 1) families' first use of the room (including discovery and delays); 2) characteristics of families accessing the room; 3) parents' positive and negative associations with the room; and 4) parents' most and least valued aspects of the room.Using a concurrent mixed methods design, parents completed questionnaires (Restorative Experiences Tool, Parenting Stress Index-Short Form, Paediatric Quality of Life Inventory) and an optional interview. We analysed data using t-tests and multiple regressions (questionnaires) and content analysis (interviews).Parents (n = 123) commonly reported delays in accessing the recreation room (n = 74, 60.2%). Parents' distress was positively related to their frequency of room use (r = 0.28, p = .001). Families of hospitalised children with lower physical (r = -0.36, p < .001) and psychosocial (r = -0.31, p = .001) functioning used the room more frequently than families of children with higher functioning. Parents reported more positive than negative associations with the rooms for themselves (t(121) = 20.92, 95% CI = 4.34-5.25), their hospitalised child (t(117) = 23.91, 95% CI = 5.00-5.90), and any siblings (t(79) = 15.76, 95% CI = 4.28-5.52). Thirteen parents completed the interviews. We identified three themes: 1) respite; 2) social support and reduced isolation; and 3) need for greater accessibility (particularly for infants/toddlers).Respite and social support provided within the recreation rooms may be particularly important for highly distressed parents and families of children with lower psychosocial and physical functioning. Dedicated areas for different age groups may help to improve accessibility of the recreation rooms.

  View details for DOI 10.1016/j.pedn.2021.05.017

  View details for PubMedID 34118590

• Access to and experience of education for children and adolescents with cancer: a scoping review protocol. Systematic reviews Bryan, G., Kelly, P., Chesters, H., Franklin, J., Griffiths, H., Langton, L., Langton, L., Wakefield, C. E., Gibson, F. 2021; 10 (1): 167

  Abstract

  Cancer diagnosis in childhood or adolescence impacts significantly on school attendance, experience and educational outcomes. While there is longstanding recognition in clinical practice that these effects span the whole illness trajectory and continue beyond treatment completion, further clarity is required on the specific barriers and facilitators to education during cancer treatment and beyond, as well as on the experiences of children and adolescents across the full range of education settings (hospital, home, virtual, original school of enrolment), in order to determine which interventions are successful in improving access and experience from their perspective. The aim of this review is to identify what is known from the existing literature about access to and experience of education for children and adolescents with cancer during and post treatment.We have planned a scoping literature review searching the following databases from inception onwards: MEDLINE (Ovid), Embase and Embase Classic, Web of Science Core Collection, Education Resources Index, Sociological Abstracts, APA PsycINFO, SCOPUS, CINAHL Plus, Emcare and The Cochrane Library. In addition, DARE, conference abstracts, key journals, and institutional websites will be searched. Arksey and O'Malley's six-step process will be followed, including a consultation exercise. Studies, reports and policies from any country providing care and treatment for children and adolescents with cancer published in English will be considered eligible for inclusion. Two reviewers will independently screen all citations, full-text articles and abstract data. A narrative summary of findings will be conducted. Data analysis will involve quantitative (e.g., frequencies) and qualitative (e.g., content and thematic analysis) methods.This is a timely examination given the increased incidence of childhood cancer, more intensive treatment regimens and improved survival rates for childhood cancer. The inclusion of a substantive consultation exercise with families and professionals will provide an important opportunity to examine the scoping review outputs. Findings will assist the childhood cancer community in developing a comprehensive evidence-based understanding of a significant associated bio-psychosocial impact of cancer diagnosis and treatment and will form the first step towards developing effective interventions and policies to mitigate identified detrimental effects.Open Science Framework (osf/io/yc4wt).

  View details for DOI 10.1186/s13643-021-01723-4

  View details for PubMedID 34099059

  View details for PubMedCentralID PMC8182947

• Systematic Review of Educational Supports of Pediatric Cancer Survivors: Current Approaches and Future Directions. Journal of clinical oncology : official journal of the American Society of Clinical Oncology Gilleland Marchak, J., Devine, K. A., Hudson, M. M., Jacobson, L. A., Michel, G., Peterson, S. R., Schulte, F., Wakefield, C. E., Sands, S. A. 2021; 39 (16): 1813-1823

  View details for DOI 10.1200/JCO.20.02471

  View details for PubMedID 33886350

• Online, Group-Based Psychological Support for Adolescent and Young Adult Cancer Survivors: Results from the Recapture Life Randomized Trial. Cancers Sansom-Daly, U. M., Wakefield, C. E., Ellis, S. J., McGill, B. C., Donoghoe, M. W., Butow, P., Bryant, R. A., Sawyer, S. M., Patterson, P., Anazodo, A., Plaster, M., Thompson, K., Holland, L., Osborn, M., Maguire, F., O'Dwyer, C., De Abreu Lourenco, R., Cohn, R. J., 2021; 13 (10)

  Abstract

  Telehealth interventions offer a practical platform to support adolescent and young adult (AYA) cancer survivors' mental health needs after treatment, yet efficacy data are lacking. We evaluated an online, group-based, videoconferencing-delivered cognitive-behavioral therapy (CBT) intervention ('Recapture Life') in a 3-arm randomized-controlled trial comparing Recapture Life with an online peer-support group, and a waitlist control, with the aim of testing its impact on quality of life, emotional distress and healthcare service use. Forty AYAs (Mage = 20.6 years) within 24-months of completing treatment participated, together with 18 support persons. No groupwise impacts were measured immediately after the six-week intervention. However, Recapture Life participants reported using more CBT skills at the six-week follow-up (OR = 5.58, 95% CI = 2.00-15.56, p = 0.001) than peer-support controls. Recapture Life participants reported higher perceived negative impact of cancer, anxiety and depression at 12-month follow-up, compared to peer-support controls. Post-hoc analyses suggested that AYAs who were further from completing cancer treatment responded better to Recapture Life than those who had completed treatment more recently. While online telehealth interventions hold promise, recruitment to this trial was challenging. As the psychological challenges of cancer survivorship are likely to evolve with time, different support models may prove more or less helpful for different sub-groups of AYA survivors at different times.

  View details for DOI 10.3390/cancers13102460

  View details for PubMedID 34070134

  View details for PubMedCentralID PMC8158368

• Reproductive Care of Childhood and Adolescent Cancer Survivors: A 12-Year Evaluation. Journal of adolescent and young adult oncology Anazodo, A. C., Choi, S., Signorelli, C., Ellis, S., Johnston, K., Wakefield, C. E., Deans, R., Neville, K. A., Cohn, R. J. 2021; 10 (2): 131-141

  Abstract

  Background: Reproductive complications for cancer survivors are identified as one of the top unmet needs in the survivorship period. However, current models of cancer care do not routinely incorporate reproductive follow-up for pediatric or adolescent cancer patients. The Kids Cancer Centre has had a one-stop survivorship clinic that includes the attendance of a gynecologist and fertility specialist for the last 12 years. Methodology: To inform the future development of our reproductive survivorship care, we reviewed the reproductive care our survivorship clinic has provided over a 12-year period, specifically reviewing the electronic and patient records to collect information on the demographics of the patients who used the service and their gonadotoxic risk and associated fertility treatment, their documented reproductive needs and concerns, and information provided on preventative reproductive advice and screening. Main Results: Two hundred seventy-eight patients were seen (397 consultations) for advice and management of reproductive issues, including 189 female patients (68.0%). Survivors' median age at follow-up was 25.0 years (range = 6-50), on average 19.2 years from their primary diagnosis (range = 3-46). The reviewed data had five overarching themes (fertility care, hormone dysfunction, sexual dysfunction, fertility-related psychological distress due to reproductive concerns, and preventative health care), although each theme had a number of components. Patients had on average 2.5 reproductive concerns documented per consultation (range 1-5). The three most commonly documented symptoms or concerns at the initial consultation related to fertility status (43.9%), endocrine dysfunction (35.3%), and contraception advice (32.4%). In patients younger than 25 years, documented discussions were predominately about endocrine dysfunction, fertility status, and contraception, while dominant themes for 26-35-year olds were fertility status, reproductive-related health prevention strategies, contraception, and endocrine dysfunction. Survivors 36-45 years of age prioritized fertility status, pregnancy, and contraception. Fertility preservation (FP) (p = 0.05), preventative health strategies (p = 0.001), and contraception advice (p < 0.001) were more commonly discussed by females than males. Conclusion: Young cancer survivors have multiple ongoing reproductive concerns that change over time. Assessing survivors' reproductive potential following cancer treatment is important as it gives patients who have not completed their family planning an opportunity to explore a possible window to FP or Assisted Reproductive Treatment. Our data can assist in informing the model of care for a reproductive survivorship clinic.

  View details for DOI 10.1089/jayao.2020.0157

  View details for PubMedID 33180653

• "We needed this": perspectives of parents and healthcare professionals involved in a pilot newborn screening program for spinal muscular atrophy. EClinicalMedicine Kariyawasam, D. S., D'Silva, A. M., Vetsch, J., Wakefield, C. E., Wiley, V., Farrar, M. A. 2021; 33: 100742

  Abstract

  Newborn screening (NBS) for spinal muscular atrophy (SMA) is a recognised model through which health outcomes can be improved. However, perspectives of parents and healthcare professionals (HCPs) involved in such programs are largely unknown.A pilot program for SMA ran from August 2018-July 2020. Using a mixed-methods convergent methodology, we used a self-administered questionnaire to understand parents' perceptions and psychological impact of the program from diagnosis to treatment. We thematically analysed successes/challenges encountered by HCPs and recommendations for service improvement from both participant groups.202,388 infants were screened for SMA and the perceptions of 44 parents and HCPs affected by a positive result in eighteen newborns was ascertained. Parents (n=29, 100%) were satisfied with NBS for SMA. Although screen-positive result was distressing for all parents, quality of life improved over time [CarerQoL-7D baseline median score 4 (SD=1.4) vs six-month median score 8 (SD=1.3), p<0.001)]. Challenges for HCPs included managing the time-critical nature of the pathway whilst remaining cognisant of limitations associated with the predictive screening test.Interpretation: NBS for SMA fulfils criteria for population-wide screening. Net benefits are acknowledged by stakeholders to optimise lifelong outcomes. Harms including psychological distress associated with a screen-positive result may be managed by targeted psychosocial support, information provision and a personalised model of care together strengthening healthcare systems.The NSW Pilot NBS study was funded by Luminesce Alliance. Dr Kariyawasam received funding from the RTP Scholarship, University of New South Wales and The Freedman Family Foundation Scholarship, Sydney Children's Hospital Foundation.

  View details for DOI 10.1016/j.eclinm.2021.100742

  View details for PubMedID 33842861

  View details for PubMedCentralID PMC8020144

• A cost-effective approach to increasing participation in patient-reported outcomes research in cancer: A randomized trial of video invitations. International journal of cancer Signorelli, C., Wakefield, C. E., McLoone, J. K., Mateos, M. K., Aaronson, N. K., Lavoipierre, A., Cohn, R. J. 2021; 148 (4): 971-980

  Abstract

  Maximizing participation in cancer research is important to improve the validity and generalizability of research findings. We conducted a four-arm randomized controlled trial to test the impact of a novel video invitation on participant response. We invited childhood cancer survivors and parents of survivors <16 years to complete questionnaires. We compared response rates to an invitation letter (control) vs receiving the letter plus a video invitation on a flash drive presented by a childhood cancer survivor, a pediatric oncologist or a researcher. We explored factors associated with viewing the video and examined the impact of enclosing the USB on study costs. Overall 54% (634/1176) of questionnaires were returned. Participants who received a video invitation on a USB were more likely to return the questionnaire than those who did not (58% vs 47%, P < .001). Participation rate did not significantly differ by video presenter. Forty-seven percent of participants who received a USB reported watching the video, of whom 48% reported that the video influenced their decision to participate. Participants with a lower income (OR = 0.43, 95% CI = 0.25-0.74, P = .002) were more likely to report watching the video. Participants who received a video invitation required significantly fewer reminder calls than those who only received a written invitation (mean = 1.6 vs 1.1 calls, P < .001), resulting in a 25% recruitment cost-saving for the study. Adding a USB with a video study invitation to recruitment packages is a cost-effective way of improving study participation. This is important in an era of declining study participation and underrepresentation of vulnerable populations in research.

  View details for DOI 10.1002/ijc.33244

  View details for PubMedID 32748404

• The Use of Activity Trackers in Interventions for Childhood Cancer Patients and Survivors: A Systematic Review. Journal of adolescent and young adult oncology Ha, L., Mizrahi, D., Wakefield, C. E., Cohn, R. J., Simar, D., Signorelli, C. 2021; 10 (1): 1-14

  Abstract

  Activity trackers have emerged as promising devices used to motivate and/or objectively monitor physical activity (PA) levels. It is unknown how activity trackers have been used in interventions for children and adolescents affected by cancer. This review aimed to investigate the effectiveness of wearable activity trackers to monitor and/or improve PA levels and health outcomes in pediatric oncology. Based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses, we conducted an electronic search of four databases (Cumulative Index to Nursing and Allied Health Literature [CINAHL], Medline, Embase, and SportDiscus) between January 2000 and March 2020. The review included PA interventions that used an activity tracker with children (≤18 years) diagnosed with cancer. We excluded studies including adult participants (>18 at time of study participation) and cross-sectional or case-report studies. Twelve studies examining 517 children and adolescent patients and survivors of pediatric cancer (age range: 4-18 years) were included. Intervention delivery ranged from 2 weeks to 12 months. Two of 12 studies reported increases in PA and 6 showed improvements in health outcomes, including aerobic fitness and negative mood. PA interventions using activity trackers within pediatric oncology are highly diverse in study design, study population, and intervention features. Preliminary data suggest that interventions using wearable activity trackers may have a positive impact on health outcomes in children and adolescents affected by cancer. Future research is needed to establish optimal intervention approaches to using activity trackers to increase PA in children affected by cancer.

  View details for DOI 10.1089/jayao.2020.0099

  View details for PubMedID 32897805

• Pediatric psycho-oncology in Russia: Caregiver mental health and sleep outcomes on the oncology wards. Psycho-oncology Burns, M. A., Aralova, M., Ellis, S. J., Aslanyan, K. S., Egorkina, T., Wakefield, C. E. 2021; 30 (2): 185-193

  Abstract

  Caregivers are at risk of poor sleep and elevated distress during their child's cancer treatment. Russia is currently underrepresented in the international psycho-oncology field, with no identified psychosocial standards of care, and limited or inconsistent psychological service provision, particularly for caregivers. This study aimed to determine the prevalence of Russian caregivers' psychological distress and identify factors associated with caregiver sleep duration when staying on the pediatric oncology ward.We recruited 74 caregivers of children with cancer and 74 comparison caregivers in Rostov-on-Don, Russia. Participants completed a survey assessing clinical outcomes, sleep (St Mary's Hospital Sleep Questionnaire), and psychological distress (Depression Anxiety Stress Scales-21 [DASS-21]).Caregivers of children with cancer reported significantly higher scores for all DASS-21 subscales and higher depression (48.6% vs. 24.6%), anxiety (47.3% vs. 12.3%), and stress (45.9% vs. 0%) scores from "moderate" to "extremely severe." Caregivers of children with cancer reported significantly shorter sleep duration (5.82 vs. 7.49 h, t[143] = -6.22, p = 0.002), more night-time awakenings (3.20 vs. 1.25, t[135] = 6.94, p < 0.001) and worse sleep quality (46.5% vs. 9.6%; x2 [1] = 24.4, p < 0.001) than comparison caregivers. Caregivers with a higher total DASS-21 score (B = -1.32, p = 0.032) and those who were closer to diagnosis (B = -1.53, p = 0.012) reported shorter sleep duration.Russian caregivers of children with cancer experience high rates of psychological distress and poor sleep on the oncology ward. These findings provide an important target for future research and culturally relevant clinical interventions to improve caregivers' mental health and capacity for care.

  View details for DOI 10.1002/pon.5547

  View details for PubMedID 32935374

• School and educational support programmes for paediatric oncology patients and survivors: A systematic review of evidence and recommendations for future research and practice. Psycho-oncology Burns, M. A., Fardell, J. E., Wakefield, C. E., Cohn, R. J., Marshall, G. M., Lum, A., Ellis, S. J., Donnan, B., Walwyn, T., Carter, A., Barton, B., Lah, S. 2021

  Abstract

  The Psychosocial Standards of Care (PSSC) in paediatric oncology prescribe the minimum standards for education support. It is unknown, however, if published education support programmes for children with cancer meet the PSSC standards for education support. Successful implementation of standards for education support is challenging but may be achieved with guidance. We aimed to (1) review education support programmes for childhood cancer patients and survivors against the PSSC standards and (2) provide practical recommendations for future research and implementation of education support programmes.We searched PsycINFO, PubMed, CINAHL, EMBASE, and Educational Resources Information and Center databases. We reviewed the education support programmes using five evaluation criteria derived from the PSSC and summarised the structure of identified programmes. We examined the features and limitations of programmes that met all evaluation criteria.We identified 20 education support programmes in paediatric oncology, including peer programmes (n = 3), teacher programmes (n = 5), and school re-entry programmes (SRPs n = 12). We found that three SRPs met all evaluation criteria and that SRP components were timed according to the child's position on the cancer trajectory (e.g., diagnosis and treatment, school re-entry, and follow up throughout schooling). The supporting evidence of the programmes, however, is unclear due to the lack of adequately designed studies.SRPs provide a promising structure for future education support programmes. We recommend strategies for developing and evaluating education support that adheres to the PSSC and adapts to international and local contexts.

  View details for DOI 10.1002/pon.5606

  View details for PubMedID 33403751

• Avatar acceptability: views from the Australian Cystic Fibrosis community on the use of personalised organoid technology to guide treatment decisions. ERJ open research Fawcett, L. K., Wakefield, C. E., Sivam, S., Middleton, P. G., Wark, P., Widger, J., Jaffe, A., Waters, S. A. 2021; 7 (1)

  Abstract

  Patient-oriented research approaches that reflect the needs and priorities of those most affected by health research outcomes improves translation of research findings into practice. Targeted therapies for cystic fibrosis (CF) are now a viable treatment option for some eligible individuals despite the heterogeneous patient-specific therapeutic response. This has necessitated development of a clinical tool that predicts treatment response for individual patients. Patient-derived mini-organs (organoids) have been at the forefront of this development. However, little is known about their acceptability in CF patients and members of the public.We used a cross-sectional observational design to conduct an online survey in people with CF, their carers and community comparisons. Acceptability was examined in five domains: 1) willingness to use organoids, 2) perceived advantages and disadvantages of organoids, 3) acceptable out-of-pocket costs, 4) turnaround time and 5) source of tissue.In total, 188 participants completed the questionnaire, including adults with CF and parents of children with CF (90 (48%)), and adults without CF and parents of children without CF (98 (52%)). Use of organoids to guide treatment decisions in CF was acceptable to 86 (95%) CF participants and 98 (100%) community participants. The most important advantage was that organoids may improve treatment selection, improving the patient's quality of life and life expectancy. The most important disadvantage was that the organoid recommended treatment might be unavailable or too expensive.These findings indicate acceptance of patient-derived organoids as a tool to predict treatment response by the majority of people surveyed. This may indicate successful future implementation into healthcare systems.

  View details for DOI 10.1183/23120541.00448-2020

  View details for PubMedID 33532470

  View details for PubMedCentralID PMC7836586

• The COVID-19 pandemic: Distance-delivered care for childhood cancer survivors. Pediatric blood & cancer McLoone, J., Wakefield, C. E., Taylor, N., Johnston, K., Sansom-Daly, U. M., Cohen, J., O'Brien, T. A., Cohn, R. J., Signorelli, C. 2020; 67 (12): e28715

  View details for DOI 10.1002/pbc.28715

  View details for PubMedID 32970366

• Psychological Outcomes, Health-Related Quality of Life, and Neurocognitive Functioning in Survivors of Childhood Cancer and Their Parents. Pediatric clinics of North America Michel, G., Brinkman, T. M., Wakefield, C. E., Grootenhuis, M. 2020; 67 (6): 1103-1134

  Abstract

  Childhood cancer disrupts the lives of patients and their families and affects acute and long-term psychological health. This article summarizes (1) psychological challenges, including depression, anxiety, worries, and posttraumatic stress, as well as positive outcomes such as benefit finding and posttraumatic growth in young survivors and parents; (2) health-related quality of life; (3) interventions to support survivors and parents with psychological difficulties; and (4) neurocognitive problems and interventions to help alleviate them. Although many survivors and parents fare well in the long term, many survivors may benefit from interventions. Interventions should be further evaluated and integrated into routine clinical care.

  View details for DOI 10.1016/j.pcl.2020.07.005

  View details for PubMedID 33131537

• The information needs of parents of children with early-onset epilepsy: A systematic review. Epilepsy & behavior : E&B Nevin, S. M., Wakefield, C. E., Schilstra, C. E., McGill, B. C., Bye, A., Palmer, E. E. 2020; 112: 107382

  Abstract

  Early-onset epilepsy has broad physical and psychosocial impacts, and parents have a wide variety of information needs. This systematic review set out to assess 1) whether parents of children with early-onset epilepsy have unmet information needs and 2) their preferences regarding information content and style of information delivery.We searched Medline, Embase, PsychInfo, and CINAHL using keywords relating to information needs, information resources, and preferences for information delivery. We limited the search to parent populations and included all peer-reviewed publications published in English after the year 2005.Eleven studies met our inclusion criteria. Parents reported a clear need for understandable, realistic, and focused information, highlighting a particular need for content about comorbidities and emotional support. Parents reported limited availability of detailed information resources on early-onset epilepsy, which compromised their ability to access appropriate healthcare services. Unmet information needs were associated with greater levels of stress, poorer psychosocial outcomes, and lower satisfaction with healthcare services.The results highlight the importance of detailed epilepsy information for families. Healthcare professionals should be aware of the impact of a lack of epilepsy information on family wellbeing. Multipronged and tailored interventions targeting the information needs of families are warranted.

  View details for DOI 10.1016/j.yebeh.2020.107382

  View details for PubMedID 32854014

• Aligning intuition and theory: enhancing the replicability of behaviour change interventions in cancer genetics. Implementation science communications Taylor, N., Healey, E., Morrow, A., Greening, S., Wakefield, C. E., Warwick, L., Williams, R., Tucker, K. M. 2020; 1: 90

  Abstract

  Despite considerable encouragement for healthcare professionals to use or be clear about the theory used in their improvement programmes, the uptake of these approaches to design interventions or report their content is lacking. Recommendations suggest healthcare practitioners work with social and/or behavioural scientists to gain expertise in programme theory, ideally before, but even during or after the work is done. We aim to demonstrate the extent to which intuitive intervention strategies designed by healthcare professionals to overcome patient barriers to communicating genetic cancer risk information to family members align with a theoretical framework of behaviour change.As part of a pre-post intervention study, a team of genetic counsellors aimed to understand, and design interventions to overcome, the major barriers a group of familial cancer patients face around communicating hereditary cancer risk information to their relatives. A behavioural change specialist worked with the team to review and recode barriers and interventions according to the Theoretical Domains Framework (TDF) and 93 behaviour change techniques (BCTs). Resulting BCTs were cross-referenced against the Theory and Techniques Tool to examine whether evidence-based mechanistic links have been established to date.Five themes emerged from the genetic counsellor coded barriers, which when recoded according to the TDF represented seven domains of behaviour change. Forty-five experiential and intuitive interventions were used to tackle key barriers. These were represented by 21 BCTs, which were found to be used on 131 occasions. The full mapping exercise is presented, resulting in a suite of intervention strategies explicitly linked to a theoretical framework. Structured, written reflections were provided retrospectively by the core clinical team.Although the ideal is to use theory prospectively, or even whilst a project is underway, making links between theory and interventions explicit, even retrospectively, can contribute towards standardising intervention strategies, furthering understanding of intervention effects, and enhancing the opportunities for accurate replicability and generalisability across other settings. Demonstrating to healthcare professionals how their intuition aligns with theory may highlight the additional benefits that theory has to offer and serve to promote its use in improvement.

  View details for DOI 10.1186/s43058-020-00054-0

  View details for PubMedID 33073243

  View details for PubMedCentralID PMC7557091

• Camps for Children with Cancer and Their Families: A Systematic Review of Psychosocial and Physical Impacts. Journal of developmental and behavioral pediatrics : JDBP Kelada, L., Wakefield, C. E., Cruz Silva, M. C., Signorelli, C. 2020; 41 (2): 145-156

  Abstract

  Camps for children with cancer and their families aim to promote positive psychosocial and physical outcomes for attendees. However, evidence for this is inconsistent, and previous reviews have not delineated between camps for children (patient/survivors and siblings) and family camps (including parents/guardians). Such understanding is necessary to understand the evidence-based benefits of each type of camp. Our systematic review summarizes the findings and limitations of the recent literature for children's camps and family camps.We searched MEDLINE/PubMed, PsycINFO, Social Work Abstracts, and Google Scholar for relevant articles published between 2013 and 2018.Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses protocol, we included 19 articles (from 15 studies) in the review. Evidence for the impact of camps was mixed. All articles reported positive outcomes, yet 3 quantitative articles also reported nonsignificant changes. Camps for children (representing 2151 children with cancer/survivors) appeared to facilitate social skills, self-esteem, and physical activity. Family camps (representing 96 families) may provide families the opportunity to reconnect. Both types of camp provide attendees with social support and fun/respite. In 2 qualitative articles, some parents attending family camps reported tension between families of children on treatment and bereaved families. The literature is limited by small sample sizes and the lack of multisite, longitudinal, and controlled study designs.The recent literature provides evidence for some positive, short-term psychosocial and physical outcomes of camps. Future research should use rigorous quasiexperimental designs and should assess the long-term impact of camp attendance.

  View details for DOI 10.1097/DBP.0000000000000728

  View details for PubMedID 31567721

• A Decision Aid for Nutrition Support is Acceptable in the Pediatric Hospital Setting. Journal of pediatric nursing Buchhorn-White, J., Robertson, E. G., Wakefield, C. E., Cohen, J. 2020; 55: 165-173

  Abstract

  Incorporating a Decision Aid (DA) about nutrition support into the general pediatric healthcare setting may improve parent and patient understanding about the risks and benefits of nutrition support options. We aimed to evaluate the acceptability and usability of our newly developed DA for parents of children in the general pediatric healthcare setting who require nutrition support.Participants were 18 parents with a child who had received nutrition support; and 12 Healthcare Professionals (HCPs) involved in pediatric nutrition support discussions. Parents' and HCPs' ratings of acceptability and feasibility of the booklet, and parents' perceived knowledge acquisition after reading the booklet were assessed.Parents were satisfied with the DA, reporting that it was an appropriate length and unbiased. Most parents felt the DA was relevant to their decision-making, improved understanding, and would recommend it to other parents. HCPs felt that the booklet clearly described the essential information for nutrition support options, but less certain of the booklets' impact on parent decision-making. Regardless, most HCPs would recommend the booklet to other clinicians.Our decision aid appears to be acceptable and useful for parents deciding on nutrition support for their child in the general pediatric hospital setting.A DA may facilitate shared decision-making through improved understanding of the risks and benefits of different nutrition support options in the pediatric setting. Further evaluation is required with specific pediatric conditions, to determine the effectiveness for parents actively deciding on their child's nutrition support.

  View details for DOI 10.1016/j.pedn.2020.08.013

  View details for PubMedID 32950824

• What instruments should we use to assess paediatric decision-making interventions? A narrative review. Journal of child health care : for professionals working with children in the hospital and community Robertson, E. G., Cohen, J., Signorelli, C., Grant, D. M., Fardell, J. E., Wakefield, C. E. 2020; 24 (3): 458-472

  Abstract

  There is an increasing number of shared decision-making (SDM) interventions in paediatrics. However, there is little consensus as to the best instruments to assess the feasibility and impact of these interventions. This narrative review aims to answer: (1) what feasibility, knowledge and decision-making instruments have been used to assess paediatric SDM interventions and (2) what are the psychometric properties of used decision-making instruments, guided by the 'consensus-based standards for the selection of health measurement instrument' criteria. We conducted a review of the peer-reviewed literature. We identified 23 studies that evaluated a paediatric intervention to facilitate SDM for a specific health decision. Eighteen studies assessed intervention feasibility, with a wide variability in assessment between studies. Twelve studies assessed objective knowledge, and four studies assessed subjective knowledge with all but one study aggregating correct responses. We identified nine decision-making instruments that had been assessed psychometrically, although few had been thoroughly evaluated. The Decisional Conflict Scale was the most commonly-used instrument and the only instrument evaluated in paediatrics. Our study revealed a lack of consistency in the instruments used to evaluate decision-making interventions in paediatrics, making it difficult to compare interventions. We provide several recommendations for researchers to improve the assessment of SDM interventions in paediatrics.

  View details for DOI 10.1177/1367493519869717

  View details for PubMedID 31450963

• Acceptability and feasibility of a parent-targeted dietary intervention in young survivors of childhood cancer: "Reboot". Pediatric blood & cancer Touyz, L. M., Cohen, J., Garnett, S. P., Grech, A. M., Gohil, P., Cohn, R. J., Wakefield, C. E. 2020; 67 (9): e28533

  Abstract

  Assess the acceptability and feasibility of delivering Reboot, a telephone dietary intervention to parents of pediatric cancer survivors. The research question asks whether tailored dietary support is acceptable and feasible to deliver to parents of young cancer survivors who have recently completed cancer treatment?Pre-post study. Nineteen parents of pediatric cancer survivors (aged 2-13 years) in remission, who had received cancer treatment at a tertiary children's hospital, less than 5 years prior to the intervention. Participants received four weekly 45-min telephone sessions led by a psychologist or dietitian and one postintervention booster session 6 weeks later. Sessions addressed strategies to increase children's vegetable and fruit intake.Of the 19 parents who started the intervention, 14 completed all sessions within 8 weeks and 12 completed the booster session within 10 weeks. The mean session duration was 47 min. All participants reported that Reboot increased their confidence and knowledge about promoting healthy eating habits to their child.Reboot is an acceptable intervention in young cancer survivors aimed at increasing vegetable and fruit intake after cancer treatment.The results from the Reboot pilot provides preliminary evidence that a targeted intervention to improve the diets of childhood cancer survivors may be feasible with future modification.

  View details for DOI 10.1002/pbc.28533

  View details for PubMedID 32649015

• Prevalence, hospital admissions and costs of child chronic conditions: A population-based study. Journal of paediatrics and child health Bell, J., Lingam, R., Wakefield, C. E., Fardell, J. E., Zeltzer, J., Hu, N., Woolfenden, S., Callander, E., Marshall, G. M., Nassar, N. 2020; 56 (9): 1365-1370

  Abstract

  To determine population-based prevalence, hospital use and costs for children admitted to hospital with chronic conditions.We used hospital admissions data for children aged <16 years, 2002-2013 in New South Wales, Australia.Of all admissions, 35% (n = 692 514) included a diagnosis of a chronic condition. In 2013, prevalence was 25.1 per 1000 children. Children with greater socio-economic disadvantage or living in regional and remote areas had lower prevalence, but a higher proportion of emergency admissions. Prevalence rates were highest for respiratory and neurological conditions (9.4, 7.4 per 1000, respectively). Mental health conditions were most common in older children. Admissions involving chronic conditions had longer length of stay (3.0 vs. 1.6 days), consumed more bed-days (50% of total) and involved 43% of total hospital costs.Differences in prevalence and use of hospital services suggest inequities in access and need for more appropriate and equitable models of care.

  View details for DOI 10.1111/jpc.14932

  View details for PubMedID 32502332

• Understanding parents' communication experiences in childhood cancer: a qualitative exploration and model for future research. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Baenziger, J., Hetherington, K., Wakefield, C. E., Carlson, L., McGill, B. C., Cohn, R. J., Michel, G., Sansom-Daly, U. M. 2020; 28 (9): 4467-4476

  Abstract

  Following their child's cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents' difficulties when interacting with health-care professionals (HCPs). We examined parents' health-care experiences during and after the child's cancer treatment.We recruited parents of children/adolescents (aged < 18 years) who had recently completed cancer treatment with curative intent from eight Australian hospitals. We conducted in-depth interviews using the psychosocial adjustment to illness scale while recruiting for the "CASCADE" survivorship intervention. We used grounded theory to explore parents' health-care experiences.Fifty-two mothers and six fathers of survivors (mean age at diagnosis = 5.1 years, time since treatment = 1.9 years) participated. Parents' experiences were characterized by (1) positive and negative interactions, (2) attitudes towards health care and HCPs, (3) trust and mistrust in the doctor-parent relationship, and (4) parents' engagement in care. Parents built trust with HCPs, who seemed approachable and personable. Although parents' experience was overall very positive, nearly half of parents reported negative interactions and mistrust. Parents rationalized negative experiences as caused by constraints in the health-care setting. Most parents felt support ended prematurely. We propose a new model accounting for these experiences and identifying potential underlying mechanisms.Depending on their degree of trust, parents followed recommendations more closely (high trust) or focused on being advocates for their child (low trust). Parents minimized the impact of negative HCP interactions through internal, rationalizing processes. Our findings demonstrate parents' flexibility in acting as a dynamic buffer between HCP-interactions and their child.

  View details for DOI 10.1007/s00520-019-05270-6

  View details for PubMedID 31927756

• The 6-minute walk test is a good predictor of cardiorespiratory fitness in childhood cancer survivors when access to comprehensive testing is limited. International journal of cancer Mizrahi, D., Fardell, J. E., Cohn, R. J., Partin, R. E., Howell, C. R., Hudson, M. M., Robison, L. L., Ness, K. K., McBride, J., Field, P., Wakefield, C. E., Simar, D. 2020; 147 (3): 847-855

  Abstract

  Cardiovascular disease is up to 10 times more likely among childhood cancer survivors compared to siblings. Low cardiorespiratory fitness is a modifiable risk-factor for cardiovascular diseases. Yet, cardiorespiratory fitness is not routinely screened in pediatric oncology, and healthy VO2max cut-points are unavailable. We aimed to predict cardiorespiratory fitness by developing a simple algorithm and establish cut-points identifying survivors' cardiovascular fitness health-risk zones. We recruited 262 childhood cancer survivors (8-18 years old, ≥1-year posttreatment). Participants completed gold-standard cardiorespiratory fitness assessment (Cardiopulmonary Exercise Test [CPET; VO2max ]) and 6-minute walk test (6MWT). Associations with VO2max were included in a linear regression algorithm to predict VO2max , which was then cross-validated. We used Bland-Altman's limits of agreement and Receiver Operating Characteristic curves using FITNESSGRAM's "Healthy Fitness Zones" to identify cut-points for adequate cardiorespiratory fitness. A total of 199 participants (aged 13.7 ± 2.7 years, 8.5 ± 3.5 years posttreatment) were included. We found a strong positive correlation between VO2max and 6MWT distance (r = 0.61, r2 = 0.37, p < 0.001). Our regression algorithm included 6MWT distance, waist-to-height ratio, age and sex to predict VO2max (r = 0.79, r2 = 0.62, p < 0.001). Forty percentages of predicted VO2max values were within ±3 ml/kg/min of measured VO2max . The cut-point for FITNESSGRAM's "health-risk" fitness zone was 39.8 ml/kg/min (males: AUC = 0.88), and 33.5 ml/kg/min (females: AUC = 0.82). We present an algorithm to reasonably predict cardiorespiratory fitness for childhood cancer survivors, using inexpensive measures. This algorithm has useful clinical application, particularly when CPET is unavailable. Our algorithm has the potential to assist clinicians to identify survivors below the cut-points with increased cardiovascular disease-risk, to monitor and refer for tailored interventions with exercise specialists.

  View details for DOI 10.1002/ijc.32819

  View details for PubMedID 31800093

  View details for PubMedCentralID PMC7269841

• Re-Engage: A Novel Nurse-Led Program for Survivors of Childhood Cancer Who Are Disengaged From Cancer-Related Care. Journal of the National Comprehensive Cancer Network : JNCCN Signorelli, C., Wakefield, C. E., Johnston, K. A., Fardell, J. E., McLoone, J. K., Brierley, M. E., Schaffer, M., Thornton-Benko, E., Girgis, A., Wallace, W. H., Cohn, R. J. 2020; 18 (8): 1067-1074

  Abstract

  Survivors of childhood cancer often experience treatment-related chronic health conditions. Survivorship care improves survivors' physical and mental health, yet many are disengaged from care. Innovative models of care are necessary to overcome patient-reported barriers to accessing survivorship care and to maximize survivors' health.We piloted a novel survivorship program, called "Re-engage," a distance-delivered, nurse-led intervention aiming to engage, educate, and empower survivors not receiving any cancer-related care. Re-engage involves a nurse-led consultation delivered via telephone/online to establish survivors' medical history and needs. Participants completed questionnaires at baseline, 1 month postintervention, and 6-month follow-up.A total of 27 survivors who had not accessed survivorship care in the last 2 years participated (median age, 31 years; interquartile range [IQR], 27-39 years); of which, 82% were at high-risk for treatment-related complications. Participation in Re-engage was high (75%) and there was no attrition once survivors enrolled. At 1 month postintervention, 92% of survivors reported that Re-engage was "beneficial," which all survivors reported at 6-month follow-up. Survivors' overall satisfaction with their care increased from 52% before Re-engage to 84% at 1 month postintervention. Survivors' mean self-efficacy scores remained similar from baseline to 1 month postintervention (b = -0.33, 95% CI, -1.31 to 0.65), but increased significantly from baseline to 6-month follow-up (b = 1.64, 95% CI, 0.28-3.00). At 6-month follow-up, 73% of survivors showed an increase in health-related self-efficacy compared with baseline.Re-engage is a highly acceptable and feasible intervention and promotes health-related self-efficacy, which is integral to survivors being advocates for their own health. Further empirical work is needed to evaluate the long-term efficacy of Re-engage.ACTRN12618000194268.

  View details for DOI 10.6004/jnccn.2020.7552

  View details for PubMedID 32755982

• Financial toxicity of childhood cancer and changes to parents' employment after treatment completion. Pediatric blood & cancer Kelada, L., Wakefield, C. E., Vetsch, J., Schofield, D., Sansom-Daly, U. M., Hetherington, K., O'Brien, T., Cohn, R. J., Anazodo, A., Viney, R., Zeppel, M. J. 2020; 67 (7): e28345

  Abstract

  Childhood cancer can have short- and long-term impacts on parents' finances and employment. It is important to understand how families adjust to the financial and employment changes caused by childhood cancer, the ongoing impacts after treatment completion, and which families need more targeted support. Qualitative research is necessary to facilitate an in-depth understanding of the employment and financial impacts on families and to capture parents' complex and nuanced experiences and perspectives.We interviewed 56 parents of childhood cancer survivors (M = 2.13 years after treatment completion; 89% mothers) using the vocational and financial impact section of the Psychosocial Adjustment to Illness Scale-Carer Interview Form. We analyzed interviews using content analysis.Parents reported multiple sources of financial toxicity including travel to and from the hospital and needing to reduce their working hours during their child's cancer treatment. Workplace flexibility was an important factor to protect against unwanted vocational changes. After treatment completion, families living in low socioeconomic areas commonly reported ongoing financial difficulties. Mothers, particularly those who were on maternity leave when their child was diagnosed with cancer, reported ongoing employment impacts including unemployment.Clinical staff including social workers could more consistently assess families' financial distress and refer to professional services who can offer guidance for financial decision-making as standard care. Flexible workplace agreements appear important for parents of children with cancer. Our findings can assist organizations to understand that cancer-related disruptions are likely to continue after treatment completion, and therefore should offer benefits to parents where possible.

  View details for DOI 10.1002/pbc.28345

  View details for PubMedID 32333636

• Barriers and enablers to physical activity and aerobic fitness deficits among childhood cancer survivors. Pediatric blood & cancer Mizrahi, D., Wakefield, C. E., Simar, D., Ha, L., McBride, J., Field, P., Cohn, R. J., Fardell, J. E. 2020; 67 (7): e28339

  Abstract

  Physical activity and aerobic fitness are modifiable risk factors for cardiovascular disease (CVD) after childhood cancer. How survivors engage in physical activity remains unclear, potentially increasing CVD risk. We assessed survivors' physical activity levels, barriers and enablers, fitness, and identified predictors of fitness and physical activity stage of change.Childhood cancer survivors (CCS; 8-18 years old) ≥1 year post-treatment were assessed for aerobic fitness (6-min walk test), used to extrapolate VO2max , and body composition (InBody 570). Survivors self-reported physical activity to determine stage of change (Patient-Centered Assessment and Counselling for Exercise). Physical activity and fitness were compared with guidelines and CVD-risk cut-points (VO2max  < 42 mL/kg/min: males; VO2max  < 35 mL/kg/min: females). Multiple regression and mediator-moderator analysis were used to identify fitness predictors and stage of change.One hundred two survivors (12.8 ± 3.3 years) participated (46% acute lymphoblastic leukaemia). Forty percent of males (VO2max  = 43.3 ± 6.3 mL/kg/min) and 28% of females (VO2max  = 36.5 ± 5.9 mL/kg/min) were in the CVD-risk category, while 25% met physical activity guidelines. Most prevalent physical activity barriers were fatigue (52%), preferring television instead of exercise (38%), and lacking time (34%). Predictive factors for reduced fitness included being older, female, higher waist-to-height ratio, higher screen time, and moderated by lower physical activity (r2  = 0.91, P < .001). Survivors with higher physical activity stage of change were male, lower body fat percentage, lower screen time, and lived with both parents (r = 0.42, P = .003).Aerobic fitness and physical activity of CCS is low compared with population norms, potentially increasing CVD risk. Addressing physical activity barriers and enablers, including reducing screen time, could promote regular physical activity, reducing CVD risk.

  View details for DOI 10.1002/pbc.28339

  View details for PubMedID 32386117

• An Evaluation of By My Side: Peer Support in Written Form is Acceptable and Useful for Parents Bereaved by Childhood Cancer. Journal of pain and symptom management Raharjo, C. V., Hetherington, K., Donovan, L., Fardell, J. E., Russell, V., Cohn, R. J., Morgan, N. L., Siddiqui, J., Wakefield, C. E. 2020; 59 (6): 1278-1286

  Abstract

  Cancer is the leading cause of nonaccidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalize grief experiences and reduce parents' isolation. It is available free of charge.This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side.Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data.We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side.About 24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. About 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others.By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer.

  View details for DOI 10.1016/j.jpainsymman.2020.01.013

  View details for PubMedID 32006611

• End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice. Journal of adolescent and young adult oncology Sansom-Daly, U. M., Wakefield, C. E., Patterson, P., Cohn, R. J., Rosenberg, A. R., Wiener, L., Fardell, J. E. 2020; 9 (2): 157-165

  Abstract

  A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.

  View details for DOI 10.1089/jayao.2019.0084

  View details for PubMedID 31660768

  View details for PubMedCentralID PMC7360106

• A call to action for expanded sleep research in pediatric oncology: A position paper on behalf of the International Psycho-Oncology Society Pediatrics Special Interest Group. Psycho-oncology Daniel, L. C., van Litsenburg, R. R., Rogers, V. E., Zhou, E. S., Ellis, S. J., Wakefield, C. E., Stremler, R., Walter, L., Crabtree, V. M. 2020; 29 (3): 465-474

  Abstract

  Sleep and circadian rhythms are closely related to physical and psychosocial well-being. However, sleep and circadian rhythm disruptions are often overlooked in children with cancer, as they are frequently considered temporary side effects of therapy that resolve when treatment ends. Yet, evidence from adult oncology suggests a bidirectional relationship wherein cancer and its treatment disrupt sleep and circadian rhythms, which are associated with negative health outcomes such as poor immune functioning and lower survival rates. A growing body of research demonstrates that sleep problems are prevalent among children with cancer and can persist into survivorship. However, medical and psychosocial outcomes of poor sleep and circadian rhythmicity have not been explored in this context. It is essential to increase our understanding because sleep and circadian rhythms are vital components of health and quality of life. In children without cancer, sleep and circadian disturbances respond well to intervention, suggesting that they may also be modifiable in children with cancer. We present this paper as a call to (a) incorporate sleep or circadian rhythm assessment into pediatric cancer clinical trials, (b) address gaps in understanding the bidirectional relationship between sleep or circadian rhythms and health throughout the cancer trajectory, and (c) integrate sleep and circadian science into oncologic treatment.

  View details for DOI 10.1002/pon.5242

  View details for PubMedID 31654575

  View details for PubMedCentralID PMC9539613

• Meal planning values impacted by the cancer experience in families with school-aged survivors-a qualitative exploration and recommendations for intervention development. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Raber, M., Crawford, K., Baranowski, T., Sharma, S. V., Schick, V., Markham, C., Roth, M., Wakefield, C. E., Chandra, J. 2020; 28 (3): 1305-1313

  Abstract

  Increased cardiovascular disease and second cancer risks among childhood cancer survivors (CCS) makes them and their families important audiences for nutrition intervention. Family meals and home cooking practices have been associated with improved diet and health, but there is a gap in the literature on understanding these behaviors and their motivating values among CCS families. This study qualitatively explores family meal values and behaviors in a sample of CCS parent-child dyads.This observational and qualitative study recruited a convenience sample of 11 parent-CCS dyads. Data collection included audio and video recording of food preparation events in participant homes, which were analyzed with an inductive coding technique to examine meal-related values in CCS families.Analyses revealed four major categories of meal values. Effort, including time and difficulty, as well as budget, healthfulness, and family preferences emerged as recurrent values impacting meal preparation. These values were impacted by the cancer experience upon diagnosis, during treatment, and into survivorship.A better understanding of CCS family meal planning values, the impact of the cancer experience on these values, and the inclusion of CCS in food preparation reveals potential intervention targets, facilitators, and barriers for future interventions to improve dietary behaviors among CCS.

  View details for DOI 10.1007/s00520-019-04928-5

  View details for PubMedID 31243584

  View details for PubMedCentralID PMC6930971

• When to break the news and whose responsibility is it? A cross-sectional qualitative study of health professionals' views regarding disclosure of BRCA genetic cancer risk. BMJ open Young, A. L., Butow, P. N., Tucker, K. M., Wakefield, C. E., Healey, E., Williams, R. 2020; 10 (2): e033127

  Abstract

  Disclosure of a hereditary condition in the family poses notable challenges for patients who often seek the assistance of genetic health professionals (GHPs). This study aimed to investigate GHPs' opinions about the ideal time for disclosure to offspring and their responsibility to at-risk relatives.Cross-sectional qualitative study.Genetic familial cancer clinics related to mostly secondary and tertiary care hospitals and centres in urban, regional and rural areas across all states of Australia.GHPs (N=73) including clinical geneticists, genetic counsellors, medical specialists, nurses, surgeons and mental health specialists (eg, psychiatrists, psychologists) who had worked with BRCA1 and BRCA2 families for an average of 9 years.Focus groups and interviews were transcribed and analysed thematically. GHPs perceived that life stage, maturity, parents' knowledge and capacity to disseminate information influenced parent-offspring disclosure. In general, GHPs recommended early informal conversations with offspring about a family illness. GHPs considered that facilitation of disclosure to relatives using counselling strategies was their responsibility, yet there were limitations to their role (eg, legal and resource constraints). Variability exists in the extent to which genetic clinics overcome challenges to disclosure.GHPs' views on the ideal time for the disclosure of genetic risk are generally dependent on the patient's age and relative's ability to disclose information. A responsibility towards the patient and their at-risk relative was widely accepted as a role of a GHP but views vary depending on legislative and specialty differences. Greater uniformity is needed in genetic procedural guidelines and the role of each discipline (eg, geneticists, genetic counsellors, oncologists, nurses and mental health specialists) in genetic clinics to manage disclosure challenges.

  View details for DOI 10.1136/bmjopen-2019-033127

  View details for PubMedID 32102811

  View details for PubMedCentralID PMC7045026

• Communication during childhood cancer: Systematic review of patient perspectives. Cancer Lin, B., Gutman, T., Hanson, C. S., Ju, A., Manera, K., Butow, P., Cohn, R. J., Dalla-Pozza, L., Greenzang, K. A., Mack, J., Wakefield, C. E., Craig, J. C., Tong, A. 2020; 126 (4): 701-716

  Abstract

  Effective communication is challenging in childhood cancer, where decisions carry unpredictable and life-threatening implications. We aimed to describe patients' experiences of communicating with clinicians during treatment of childhood cancer. A systematic review of qualitative studies to April 2019 was performed. Eligible studies included patients diagnosed with cancer at age ≤ 18 years and reported their perspectives of communicating with clinicians during treatment of childhood cancer. Data were extracted from primary studies for thematic synthesis. From 101 articles across 25 countries involving 1870 participants who were diagnosed with cancer between ages 3 to 18 years, we identified 6 themes: 1) rendered invisible and powerless (displaced and undermined by adult authority; betrayed and distrustful; feeling neglected; helpless and intimidated; disempowered by lack of information); 2) fear and worry for the future (paralyzed by devastating news; uncertainty, anticipation, and dread; broaching intimate and private topics); 3) burdened with responsibility (pressured and unprepared; balancing external expectations; protecting hope); 4) therapeutic patient-provider relationships (emotional support and encouragement; validated personhood and companionship); 5) safety in trust (truthfulness and transparency; prepared by awareness and understanding; reassured by reliable expertise; depending on adults for protection and difficult decisions; security in expressing opinions and needs); and 6) empowerment and assertive agency (right to individual knowledge and choice; control over own life; partnership and respect; enhancing capacity for self-management). During treatment of childhood cancer, patients gain a sense of respect, safety, and control when they feel clinicians address their information and developmental needs. However, communication that is perceived to be parent-centered can be disempowering. Promoting child agency and partnership may improve care and outcomes for children with cancer.

  View details for DOI 10.1002/cncr.32637

  View details for PubMedID 31821552

• "Balancing Expectations with Actual Realities": Conversations with Clinicians and Scientists in the First Year of a High-Risk Childhood Cancer Precision Medicine Trial. Journal of personalized medicine McGill, B. C., Wakefield, C. E., Hetherington, K., Munro, L. J., Warby, M., Lau, L., Tyrrell, V., Ziegler, D. S., O'Brien, T. A., Marshall, G. M., Malkin, D., Hansford, J. R., Tucker, K. M., Vetsch, J. 2020; 10 (1)

  Abstract

  Precision medicine is changing cancer care and placing new demands on oncology professionals. Precision medicine trials for high-risk childhood cancer exemplify these complexities. We assessed clinicians' (n = 39) and scientists' (n = 15) experiences in the first year of the PRecISion Medicine for Children with Cancer (PRISM) trial for children and adolescents with high-risk cancers, through an in-depth semi-structured interview. We thematically analysed participants' responses regarding their professional challenges, and measured oncologists' knowledge of genetics and confidence with somatic and germline molecular test results. Both groups described positive early experiences with PRISM but were cognisant of managing parents' expectations. Key challenges for clinicians included understanding and communicating genomic results, balancing biopsy risks, and drug access. Most oncologists rated 'good' knowledge of genetics, but a minority were 'very confident' in interpreting (25%), explaining (34.4%) and making treatment recommendations (18.8%) based on somatic genetic test results. Challenges for scientists included greater emotional impact of their work and balancing translational outputs with academic productivity. Continued tracking of these challenges across the course of the trial, while assessing the perspectives of a wider range of stakeholders, is critical to drive the ongoing development of a workforce equipped to manage the demands of paediatric precision medicine.

  View details for DOI 10.3390/jpm10010009

  View details for PubMedID 32075154

  View details for PubMedCentralID PMC7151613

• Summer sun-exposure in Australian childhood cancer survivors and community reference groups. Seminars in oncology Russo, S., Wakefield, C. E., Fardell, J. E., Cohn, R. J. 2020; 47 (1): 48-55

  Abstract

  Sun-exposure can cause health problems, including melanoma and nonmelanoma skin cancer, especially in Australia where the incidence of skin cancer is particularly high. Childhood cancer survivors (CCSs) have an augmented risk due to previous cancer history and treatment. Despite recommendations advising sun protection, CCSs may be placing themselves at risk. We considered daily summer sun-exposure in an Australian cohort of CCSs and in community reference groups, and identified factors associated with sun-exposure in these populations.Summer sun-exposure data were collected on 471 CCSs (119 parents of survivors aged <16, and 352 survivors aged ≥16) and a reference group of 470 participants from the community (155 parents of children aged <16, and 355 adults aged ≥16). Survivors completed paper questionnaires and the reference groups completed an online survey. Medical records confirmed survivors' clinical information. Ordinal logistic regressions identified factors associated with daily summer sun-exposure.More daily summer sun-exposure was reported by both parents reporting for the young survivors (U = 5,522.5, P < .001; U = 31,412, P < .001) and by older survivors (U = 5,039.5, P < .001; U = 29,913, P < .001). Among younger participants greater sun-exposure was associated with being a CCS, while in older participants, greater sun-exposure was associated with being a CCS, a male, smoker/ex-smoker and was also increased in those with more sensitive skin reaction to sunlight. Focusing only on the CCSs, when treatments were considered, none statistically predicted sun-exposure in young CCSs while older CCSs who received radiotherapy were less likely to spend excess time in the sun.CCSs have sun-exposure at times of day when sun-related skin damage is highest, despite advice to avoid highest risk times. This data can inform sun-protection programs and lifestyle advice aimed at ameliorating the potential increased risk of skin cancer in CCSs.

  View details for DOI 10.1053/j.seminoncol.2020.02.004

  View details for PubMedID 32145971

• Survivorship Care Plans in Cancer: A Meta-Analysis and Systematic Review of Care Plan Outcomes. The oncologist Hill, R. E., Wakefield, C. E., Cohn, R. J., Fardell, J. E., Brierley, M. E., Kothe, E., Jacobsen, P. B., Hetherington, K., Mercieca-Bebber, R. 2020; 25 (2): e351-e372

  Abstract

  The Institute of Medicine recommends that survivorship care plans (SCPs) be included in cancer survivorship care. Our meta-analysis compares patient-reported outcomes between SCP and no SCP (control) conditions for cancer survivors. Our systematic review examines the feasibility of implementing SCPs from survivors' and health care professionals' perspectives and the impact of SCPs on health care professionals' knowledge and survivorship care provision.We searched seven online databases (inception to April 22, 2018) for articles assessing SCP feasibility and health care professional outcomes. Randomized controlled trials comparing patient-reported outcomes for SCP recipients versus controls were eligible for the meta-analysis. We performed random-effects meta-analyses using pooled standardized mean differences for each patient-reported outcome.Eight articles were eligible for the meta-analysis (n = 1,286 survivors) and 50 for the systematic review (n = 18,949 survivors; n = 3,739 health care professionals). There were no significant differences between SCP recipients and controls at 6 months postintervention on self-reported cancer and survivorship knowledge, physical functioning, satisfaction with information provision, or self-efficacy or at 12 months on anxiety, cancer-specific distress, depression, or satisfaction with follow-up care. SCPs appear to be acceptable and potentially improve survivors' adherence to medical recommendations and health care professionals' knowledge of survivorship care and late effects.SCPs appear feasible but do not improve survivors' patient-reported outcomes. Research should ascertain whether this is due to SCP ineffectiveness, implementation issues, or inappropriate research design of comparative effectiveness studies.Several organizations recommend that cancer survivors receive a survivorship care plan (SCP) after their cancer treatment; however, the impact of SCPs on cancer survivors and health care professionals is unclear. This systematic review suggests that although SCPs appear to be feasible and may improve health care professionals' knowledge of late effects and survivorship care, there is no evidence that SCPs affect cancer survivors' patient-reported outcomes. In order to justify the ongoing implementation of SCPs, additional research should evaluate SCP implementation and the research design of comparative effectiveness studies. Discussion may also be needed regarding the possibility that SCPs are fundamentally ineffective.

  View details for DOI 10.1634/theoncologist.2019-0184

  View details for PubMedID 32043786

  View details for PubMedCentralID PMC7011634

• Do qualitative interviews cause distress in adolescents and young adults asked to discuss fears of cancer recurrence? Psycho-oncology Heathcote, L. C., Loecher, N. n., Spunt, S. L., Simon, P. n., Tutelman, P. R., Wakefield, C. E., Ach, E. n., Schapira, L. n. 2020

  Abstract

  This article is protected by copyright. All rights reserved.

  View details for DOI 10.1002/pon.5544

  View details for PubMedID 32909342

• Genetics-related service and information needs of childhood cancer survivors and parents: a mixed-methods study. European journal of human genetics : EJHG Vetsch, J., Wakefield, C. E., Tucker, K. M., McCarthy, M., Signorelli, C., Walwyn, T., Alvaro, F., Cohn, R. J. 2020; 28 (1): 6-16

  Abstract

  Genetics in paediatric oncology is becoming increasingly important in diagnostics, treatment and follow-up care. Genetic testing may offer a possibility to stratify survivors follow-up care. However, survivors' and parents' preferences and needs for genetics-related services are largely unknown. This mixed-methods study assessed genetics-related information and service needs of survivors and parents. Six hundred and twenty-two participants (404 survivors: mean age: 26.27 years; 218 parents of survivors: mean age of child: 13.05 years) completed questionnaires. Eighty-seven participants (52 survivors; 35 parents) also completed in-depth telephone interviews. We analysed data using multivariable logistic regression and qualitative thematic analyses. Thirty-six of 50 families who were offered cancer-related genetic testing chose to undergo testing. Of those not offered testing, 11% of survivors and 7.6% of parents indicated that they believed it was 'likely/very likely' that the survivor had inherited a gene fault. Twenty-nine percent of survivors and 36% of parents endorsed access to a genetics specialist as important in their care. Survivors (40.9%) and parents (43.7%) indicated an unmet need for information about genetics and childhood cancer. Parents indicated a higher unmet need for information related to the survivors' future offspring than survivors (p < 0.001). Many survivors and parents have unmet needs for genetics-related services and information. Greater access to services and information might allow survivors at high risk for late effects to detect and prevent side effects early and improve medical outcomes. Addressing families' needs and preferences during survivorship may increase satisfaction with survivorship care.

  View details for DOI 10.1038/s41431-019-0481-7

  View details for PubMedID 31363185

  View details for PubMedCentralID PMC6906423

• Perceived cancer-related pain and fatigue, information needs, and fear of cancer recurrence among adult survivors of childhood cancer. Patient education and counseling Kelada, L., Wakefield, C. E., Heathcote, L. C., Jaaniste, T., Signorelli, C., Fardell, J. E., Donoghoe, M., McCarthy, M. C., Gabriel, M., Cohn, R. J. 2019; 102 (12): 2270-2278

  Abstract

  Pain and fatigue are under-researched late effects of childhood cancer and its treatment, and may be interpreted by survivors as indicating cancer recurrence. Moreover, unmet information needs for managing pain and fatigue may be related to fear of cancer recurrence. We investigated the complex relationships between perceived cancer-related pain and fatigue, unmet information needs for managing pain and fatigue, and fear of cancer recurrence.We surveyed 404 adult survivors of any form of childhood cancer (M = 16.82 years since treatment completion).Many survivors reported perceived cancer-related pain (28.7%) and fatigue (40.3%), and anticipated future pain (19.3%) and fatigue (26.2%). These symptomologies were all related to unmet information needs for managing pain (18.8%) and fatigue (32.2%; all p's<.001). Survivors reporting unmet information needs for managing pain (B = .48, 95% CI = 0.19-0.76, p = .001) and fatigue (B = .32, 95% CI = 0.06-0.52, p = .015) reported higher fear of cancer recurrence than survivors reporting no information needs.Survivors often have unmet information needs for managing pain and fatigue, and these unmet needs are related to fear of cancer recurrence.Long-term follow-up clinics should assess pain and fatigue. Information provision about pain and fatigue may be an important tool to help manage fear of cancer recurrence.

  View details for DOI 10.1016/j.pec.2019.06.022

  View details for PubMedID 31257099

• Parents', Health Care Professionals', and Scientists' Experiences of a Precision Medicine Pilot Trial for Patients With High-Risk Childhood Cancer: A Qualitative Study. JCO precision oncology Vetsch, J., Wakefield, C. E., Duve, E., McGill, B. C., Warby, M., Tucker, K. M., Malkin, D., Lau, L., Ziegler, D. S. 2019; 3: 1-11

  Abstract

  Children with high-risk cancers have low survival rates because current treatment options are limited. Precision medicine trials are designed to offer patients individualized treatment recommendations, potentially improving their clinical outcomes. However, parents' understanding is often limited, and expectations of benefit to their own child can be high. Health care professionals (HCPs) are often not familiar with precision medicine and might find managing families' expectations challenging. Scientists find themselves working with high expectations among different stakeholders to rapidly translate their identification of actionable targets in real time. Therefore, we wanted to gain an in-depth understanding of the experiences of all stakeholders involved in a new precision medicine pilot trial called TARGET, including parents, their child's HCPs, and the scientists who conducted the laboratory research and generated the data used to make treatment recommendations.We conducted semistructured interviews with all participants and analyzed the interviews thematically.We interviewed 15 parents (9 mothers; 66.7% bereaved), 17 HCPs, and 16 scientists. We identified the following themes in parents' interviews: minimal understanding and need for more information, hope as a driver of participation, challenges around biopsies, timing, and drug access, and few regrets. HCP and scientist interviews revealed themes such as embracing new technologies and collaborations and challenges managing families' expectations, timing of testing and test results, and drug access.Educating families, HCPs, and scientists to better understand the benefits and limitations of precision medicine trials may improve the transparency of the translation of discovery genomics to novel therapies, increase satisfaction with the child's care, and ameliorate the additional long-term psychosocial burden for families already affected by high-risk childhood cancer.

  View details for DOI 10.1200/PO.19.00235

  View details for PubMedID 35100729

• Health professional and at-risk BRCA young adult perspectives about information needs: What does Gen Y need to know? Journal of genetic counseling Young, A. L., Butow, P. N., Tucker, K. M., Williams, R., Healey, E., Wakefield, C. E. 2019; 28 (6): 1154-1165

  Abstract

  Young adults at risk of a hereditary condition require the provision of accurate information to make an informed decision about genetic testing and risk management options. At-risk young adults' (18- to 40-year olds) preferences for information and resources, and genetic-related health professionals' (GHPs) views on young adults' information needs, are largely unknown in the literature. This study aimed to clarify and compare the information needs of emerging (18- to 25-year olds) and early (26- to 40-year olds) adults. Resource preferences of young adults were also explored. Findings are drawn from two datasets: questionnaires and semi-structured interviews with at-risk young adults from BRCA1 or BRCA2 families (N = 32), and focus groups with GHPs (N = 73) working in Australian familial cancer clinics. Both datasets were analyzed using framework analysis. Emerging adults, particularly those who had not attended a clinic, wanted to know the rationale for genetic testing and basic genetic facts. Early adults were concerned about reproductive issues and cancer risk for future or current children. Information needs reported by young adults but not reported by GHPs include male cancer risk, finding reputable information, understanding test results (e.g., negative), and understanding risk terminology (e.g., lifetime cancer risk). Young adults' satisfaction with current information received was suboptimal, yet uptake of genetic-related resources was generally low. Getting information to this cohort remains a challenge for GHPs. Emerging adults showed a preference to obtain information through technologically-based formats (e.g., websites, social media), whereas early adults used a wider range of formats (e.g., websites, booklets). Awareness of and access to genetic information prior to genetic clinic attendance is needed. A review of the utility of current resources available for at-risk young adults would be helpful.

  View details for DOI 10.1002/jgc4.1167

  View details for PubMedID 31538377

• A Systematic Review Summarizing the State of Evidence on Bullying in Childhood Cancer Patients/Survivors. Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses Collins, D. E., Ellis, S. J., Janin, M. M., Wakefield, C. E., Bussey, K., Cohn, R. J., Lah, S., Fardell, J. E. 2019; 36 (1): 55-68

  Abstract

  One in four school-aged children is bullied. However, the risk may be greater for childhood cancer patients/survivors (diagnosed <18 years), because of symptoms of the disease and treatment that may prejudice peers. While the serious consequences of bullying are well documented in the general population, bullying may have even greater impact in children with cancer due to the myriad of challenges associated with treatment and prolonged school absence.To summarize the state of evidence on bullying in childhood cancer patients/survivors; specifically, the rate and types of bullying experienced and the associated factors.We searched five electronic databases from inception to February 2018 for original research articles reporting on bullying in childhood cancer patients/survivors.We identified 29 eligible articles, representing 1,078 patients/survivors ( M = 14.35 years). Self-reports from patients/survivors revealed a considerably higher rate of bullying (32.2%) compared with the general population (25%). Our review identified little information on the factors associated with bullying in patients/survivors. However, the bullying described tended to be verbal and was often related to the physical side effects of treatment, indicating that differences in appearance may prejudice peers. It was further suggested that educating the child's classmates about cancer may prevent bullying.Our findings confirm that bullying is a significant challenge for many childhood cancer patients/survivors. Additional studies are needed to identify factors that may influence the risk of bullying, which will inform the development of evidence-based interventions and guidelines to prevent bullying in childhood cancer patients/survivors.

  View details for DOI 10.1177/1043454218810136

  View details for PubMedID 30406714

• Challenges and strategies proposed by genetic health professionals to assist with family communication. European journal of human genetics : EJHG Young, A. L., Butow, P. N., Tucker, K. M., Wakefield, C. E., Healey, E., Williams, R. 2019; 27 (11): 1630-1638

  Abstract

  Hereditary genetic conditions have implications for the whole family and therefore genetic health professionals (GHPs) interact with multiple family members, sometimes individually and sometimes in aggregate. Family communication is important to ensure dissemination of genetic information to potentially affected relatives and to facilitate supportive family interactions around genetic testing and risk management decisions. Yet, little is known about how GHPs perceive and manage these interactions. A total of 73 GHPs working across Australian cancer genetic clinics participated in semi-structured focus groups or interviews to elucidate what aspects of family communication they found most challenging, the strategies they used, and whether current academic training provides sufficient guidance to address familial concerns. Patients' lack of understanding about the importance of communicating genetic information to at-risk relatives was the most common challenge reported. GHPs reported that the patients' concern for their families' emotional responses as well as wider family system challenges (e.g. estrangement) affected family communication. Common strategies during consultations included structuring appointments logistically to account for family dynamics and post-consultation use of family letters and follow-up appointments. GHPs generally felt equipped with the skills and training provided to address patient concerns, but also desired upskilling in techniques relating to systemic family issues and behavioural change. Reflective practice strategies were requested by geneticists and nurses to foster therapeutic skill usage. Additional family therapy training while on the job may be beneficial in order to meet current challenges faced in clinical practice and can be provided as further professional development.

  View details for DOI 10.1038/s41431-019-0447-9

  View details for PubMedID 31189929

  View details for PubMedCentralID PMC6871519

• Decision-making in childhood cancer: parents' and adolescents' views and perceptions. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Robertson, E. G., Wakefield, C. E., Shaw, J., Darlington, A. S., McGill, B. C., Cohn, R. J., Fardell, J. E. 2019; 27 (11): 4331-4340

  Abstract

  Few studies have addressed the way in which families of children with cancer make treatment decisions, and how we can meet parents' and young peoples' decisional involvement needs. We aimed to explore parents' and adolescents' views and perceptions of making medical decisions in pediatric oncology.We conducted semi-structured interviews with 25 parents of children diagnosed with cancer in the past 12 months, and 5 adolescents diagnosed in the past 12 months. Our interview schedule was underpinned by Elwyn and Miron-Shatz's decision-making model. The model acknowledges the deliberation (process of coming to a decision) and determination (making a choice) phases of decision-making. We conducted a thematic analysis.Our findings indicate that information provision is not enough to facilitate parents' decision-making involvement. Many parents sought additional information to meet their individual needs and preferences. While many parents and young people desired decisional involvement, they trusted the doctors to make treatment decisions. Feelings of distress, inadequacy, and lack of choice impacted decision-making participation. Regardless, many parents in our study were satisfied with treatment decisions, but this was largely dependent on positive treatment outcomes.Our study contributes to understanding how families of a child with cancer make treatment decisions. Families tend to rely on doctors to make treatment decisions, but often seek additional information to help them feel involved in the decision process. Findings highlight that decision-making in pediatric oncology should focus on involving families in the deliberation phase, rather than just determination of choice.

  View details for DOI 10.1007/s00520-019-04728-x

  View details for PubMedID 30880372

• School students with chronic illness have unmet academic, social, and emotional school needs. School psychology (Washington, D.C.) Lum, A., Wakefield, C. E., Donnan, B., Burns, M. A., Fardell, J. E., Jaffe, A., Kasparian, N. A., Kennedy, S. E., Leach, S. T., Lemberg, D. A., Marshall, G. M. 2019; 34 (6): 627-636

  Abstract

  Students with chronic illness generally have higher school needs than their healthy peers. The research to date examining school support for these needs has been limited to qualitative methods. We collected quantitative data to compare the school needs and supports received by 192 students with chronic illness and 208 students without chronic illness using parent-completed surveys. We assessed school experiences and receipt of school support across academic, social-emotional, and medical domains and school attendance. We analyzed the data using logistic regression. Students with chronic illness were 3.8 times more likely to have repeated a grade, 3.6 times more likely to have parent-reported academic challenges, and 4.9 times more likely to have recent illness-related school absenteeism than healthy students. Parents of students with chronic illness were 2.2 times more likely to report their child to have moderate-high emotional distress, and 4.6 times more likely to report that their child had low social confidence compared with parents of healthy students. Students with chronic illness did not receive more school-based tutoring, home-based tutoring, or support from a teacher's aide or school psychologist than healthy students. Students with chronic illness receive insufficient support to address their academic and social-emotional needs or high rates of school absenteeism. Evidence-based educational services must be developed and delivered to meet the needs of students with chronic illness at school and while recovering at home. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

  View details for DOI 10.1037/spq0000311

  View details for PubMedID 31697148

• Facilitating engagement with school in students with chronic illness through positive education: A mixed-methods comparison study. School psychology (Washington, D.C.) Lum, A., Wakefield, C. E., Donnan, B., Burns, M. A., Fardell, J. E., Jaffe, A., Kasparian, N. A., Kennedy, S. E., Leach, S. T., Lemberg, D. A., Marshall, G. M. 2019; 34 (6): 677-686

  Abstract

  Students with chronic illness may disengage from school, adversely affecting their school outcomes. Positive education targets students' social-emotional well-being (school well-being), which can increase engagement with school. We compared the relationship among positive educational practices, school well-being, and engagement with school as reported by parents of students with and without chronic illness. We used a convergent mixed-methods cross-sectional design. We collected data from 215 parents of school-age children with chronic illness and 212 parents of children without chronic illness. Data assessed positive educational practices, school well-being, and engagement with school, which we analyzed using regression and structural equation models. Forty-nine parents of students with chronic illness completed a telephone interview about their child's school experiences, which we analyzed using content analysis. School well-being was significantly lower among students with chronic illness, compared with students without chronic illness (p = .05). Higher student well-being (p ≤ .001) and higher levels of positive educational practices (p = .002) were associated with higher engagement with school. School well-being mediated the relationship between positive educational practices and engagement with school for students with chronic illness but not students without chronic illness. Parents of children with chronic illness described how positive educational practices and their child's school well-being promoted their child's engagement with school. Parents also reported the negative consequences of low school well-being. Positive educational practices alone may not be sufficient to increase engagement with school in students with low school well-being. Combined preventative and early intervention psychosocial support may best promote engagement with school in students with chronic illness. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

  View details for DOI 10.1037/spq0000315

  View details for PubMedID 31697153

• Maternal breast cancer and communicating with children: A qualitative exploration of what resources mothers want and what health professionals provide. European journal of cancer care Sinclair, M., Schofield, P., Turner, J., Rauch, P., Wakefield, C., Mann, G. B., Newman, L., Mason, K., Gilham, L., Cannell, J., Stafford, L. 2019; 28 (6): e13153

  Abstract

  To explore the communication and resource needs of mothers diagnosed with breast cancer treated with curative intent in communicating with their young children and to identify gaps in the resources and support provided to these women.Data were collected via semi-structured telephone interviews from 13 mothers who were diagnosed with breast cancer while parenting a young child (age 3-12 years), and 10 health professionals in Victoria, Australia. Data were analysed qualitatively using the Framework Method.Mothers and health professionals prioritised communication with children about the cancer diagnosis; however, health professionals and mothers differed in their views of parents' communication needs both in terms of the nature of the support/information needed and the delivery of this support/information. Mothers wanted easily accessible resources that were both instructive and practical. Mothers also emphasised quality over quantity of support. Health professionals were mostly aware of mothers' needs, however, emphasised less instructive support and information. This study highlights the need for improved coordination and tailoring of psychosocial resources and supports for these parents and families communicating about a cancer diagnosis with their young children.

  View details for DOI 10.1111/ecc.13153

  View details for PubMedID 31441564

• Childhood cancer survivors report preferring lifestyle interventions delivered in person rather than online: An adolescent and parent perspective. Pediatric blood & cancer Touyz, L. M., Cohen, J., Cohn, R. J., Garnett, S. P., Anazodo, A., Gohil, P., Grech, A. M., Ng, A., Wakefield, C. E. 2019; 66 (10): e27922

  Abstract

  Maintaining a healthy lifestyle can protect adolescent survivors of pediatric cancer against chronic diseases such as obesity and cardiovascular disease. In this study, we examined the attitudes of adolescent survivors of pediatric cancer and their parents toward improving lifestyle behaviors after cancer treatment, including their preferences for intervention delivery and perceived barriers and benefits to healthy eating and exercise.We recruited adolescent survivors of childhood cancer aged 11-19 years and their parents, from two hospitals. Participants completed a questionnaire via mail or at routine oncology clinic visits.Thirty-three adolescents (response rate 39%, mean age 15, 61% male) and 32 parents (representing 30 parent-child dyads) participated. Parents were significantly more interested in having their child participate in a lifestyle intervention than adolescents (41% of adolescents and 72% of parents, P = .012). Both groups preferred that the survivor receive lifestyle support face to face rather than online. Adolescents preferred to involve their friends (39% of adolescents and 19% of parents) whereas parents preferred to involve the family in a lifestyle intervention (15% of adolescents and 47% of parents, P = .006). Adolescents and their parents perceived a dislike of the taste of fruits and vegetables, fatigue, lack of motivation, and fear of injury as barriers to change. They perceived that keeping healthy and having more energy were benefits to participation. Participants indicated that interventions that provide face-to-face personal training and dietary education at a local gym would be well accepted.Adolescents who have had cancer in childhood have a preference for face-to-face contact with health professionals to overcome the barriers to participation in a lifestyle intervention.

  View details for DOI 10.1002/pbc.27922

  View details for PubMedID 31309668

• Paediatric surgery for childhood cancer: Lasting experiences and needs of children and parents. European journal of cancer care Gabriel, M. G., Wakefield, C. E., Vetsch, J., Karpelowsky, J. S., Darlington, A. E., Cohn, R. J., Signorelli, C. 2019; 28 (5): e13116

  Abstract

  Surgery for paediatric cancer presents many stresses on patients and families. The authors aimed to understand the long-term impact of childhood cancer surgery on survivors and parents.The study recruited participants from 11 Australia/New Zealand hospitals for telephone interviews. The authors used descriptive statistics to analyse participants' quantitative distress ratings and conducted thematic analysis of shared surgical experiences and needs.Of 32 participants (n = 17 survivors, n = 15 parents), survivors' mean age at surgery was 6.9 (SD = 5.17) and parents' children were 2.1 years old (SD = 1.41) at time of surgery. Survivors had surgery on average 15.2 years ago (SD = 6.72) and parents' children 11.5 years ago (SD = 3.94). Parents and survivors rated surgery as highly distressing. Pre-operatively, survivors recalled experiencing fear and pain mainly associated with pre-operative procedures. Post-operatively, survivors reported immobility and some lasting behavioural disturbances. Parents described pre- and intra-operative anxiety and stress and some lasting post-operative psychological disturbances. Experiences appeared to improve with clear/consistent communication from hospital staff, proximity to hospital, and with support for parents and children post-operatively.Surgical treatment for childhood cancer can have a lasting impact for survivors and parents. Better information provision may improve families' surgical experience whilst reducing anxiety, distress and physical discomfort.

  View details for DOI 10.1111/ecc.13116

  View details for PubMedID 31184790

• Parents' experiences of requests for organ and tissue donation: the value of asking. Archives of disease in childhood Darlington, A. S., Long-Sutehall, T., Randall, D., Wakefield, C., Robinson, V., Brierley, J. 2019; 104 (9): 837-843

  Abstract

  A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents' and healthcare professionals' (HCPs) experiences.A retrospective qualitative study.Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children's hospice.Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs.None.Parents' and HCPs' views and experiences of discussions about OTD.24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\ and parents' assumptions about health of organs (when donation is not discussed).The findings add new knowledge about parents' assumptions about the value of their child's organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised.

  View details for DOI 10.1136/archdischild-2018-316382

  View details for PubMedID 31079074

• "I remember how I felt, but I don't remember the gene": Families' experiences of cancer-related genetic testing in childhood. Pediatric blood & cancer McGill, B. C., Wakefield, C. E., Vetsch, J., Lim, Q., Warby, M., Metcalfe, A., Byrne, J. A., Cohn, R. J., Tucker, K. M. 2019; 66 (8): e27762

  Abstract

  Genetic testing in children for hereditary cancer predisposition syndromes (CPSs) involves unique psychosocial and family-systems considerations. This retrospective study explored the perspectives and emotional reactions of parents and young adults about cancer-related genetic counseling and testing offered to children in the family.Families were eligible if they had considered genetic testing for a child (≤18 years) within the family. Parents and young adults ≥16 years participated in semistructured interviews that we coded and identified key themes. We also quantitively assessed emotional distress, quality of life, impact of receiving genetic cancer risk information, and service-related satisfaction.From 35 interviews (26 parents, nine young adults), we identified themes spanning families' experiences from referral to genetic services to the longer term impact of receiving information about family cancer risk from testing of children. Supported by quantitative data, families generally described positive experiences of genetic services and reported benefits to genetic testing. Nevertheless, families faced unique emotional and relational challenges that changed over the family lifecycle. Those challenges differed according to whether the child was asymptomatic or had a cancer diagnosis at testing. Parents of children with cancer described genetic consultations as a secondary concern to the immediate stressors of their child's treatment.We conclude that the successful integration of cancer genetics into pediatric cancer care requires specialist pediatric genetic counseling and psychosocial support services that are able to respond to families' changing needs.

  View details for DOI 10.1002/pbc.27762

  View details for PubMedID 31006986

• Impact of physical appearance changes reported by adolescent and young adult cancer survivors: A qualitative analysis. European journal of cancer care Brierley, M. E., Sansom-Daly, U. M., Baenziger, J., McGill, B., Wakefield, C. E. 2019; 28 (4): e13052

  Abstract

  Poor body image may be one driver of distress for adolescent and young adults (AYAs) after cancer. We explored physical appearance changes reported by AYA cancer survivors to understand impacts on body image, distress, lifestyle and health behaviours. We recruited AYAs (15-25 years) who had completed cancer treatment. Using semi-structured interviews, we asked participants about appearance changes resulting from their cancer. We used iterative thematic analyses to explain experiences. Forty-three participants (51% male, mean age = 21 years) completed an interview. Two key themes emerged. Participants discussed physical appearance changes and psychosocial impacts including appraisal of their changed appearance. Thirty-eight participants (n = 38/43) reported that their cancer and/or treatment changed their appearance (most commonly: alopecia [n = 15/43], scarring [n = 14/43] and weight gain [n = 11/43]). Ten participants (n = 10/43) acknowledged body dissatisfaction. Other impacts included feeling a loss of identity, not being recognised by peers and feeling helpless to change. Our results have translational significance for AYA care. Body image concerns should be considered a potential barrier to successful reintegration post-treatment. AYAs may benefit from familial and peer support, healthy lifestyle interventions and clinical environments catering to appearance-related sensitivities.

  View details for DOI 10.1111/ecc.13052

  View details for PubMedID 31025791

• Piloting a parent and patient decision aid to support clinical trial decision making in childhood cancer. Psycho-oncology Robertson, E. G., Wakefield, C. E., Cohn, R. J., Battisti, R. A., Donoghoe, M. W., Ziegler, D. S., Fardell, J. E., Mitchell, R., O'Brien, T. A. 2019; 28 (7): 1520-1529

  Abstract

  Families of a child with cancer can find the decision to enrol in a clinical trial challenging and often misunderstand key concepts that underpin trials. We pilot tested "Delta," an online and booklet decision aid for parents with a child with cancer, and adolescents with cancer, deciding whether or not to enrol in a clinical trial.We developed Delta in accordance with the International Patient Decision Aid Standards. We conducted a pre-post pilot with parents with a child, and adolescents, who had enrolled in a paediatric phase III clinical trial for newly diagnosed acute lymphoblastic leukaemia. Parents (n = 37) and adolescents (n = 3) completed a questionnaire before and after using Delta (either the website or booklet, based on their preference).Twenty-three parents (62.2%) and three adolescents (100%) reviewed the Delta website. Parents rated Delta as highly acceptable in regard to being clearly presented, informative, easy to read, useful, visually appealing, and easy to use. All participants reported that they would recommend Delta to others and that it would have been useful when making their decision. Parents' subjective (Mdiff= 10.8, SDdiff  = 15.69, P < .001) and objective (OR = 2.25, 95% CI, 1.66-3.04; P < .001) clinical trial knowledge increased significantly after reviewing Delta.To our knowledge, Delta is the first reported decision aid, available online and as a booklet, for parents and adolescents deciding whether or not to enrol in a paediatric oncology clinical trial. Our study suggests that Delta is acceptable, feasible, and potentially useful.

  View details for DOI 10.1002/pon.5109

  View details for PubMedID 31099124

• Talking across generations: Family communication about BRCA1 and BRCA2 genetic cancer risk. Journal of genetic counseling Young, A. L., Butow, P. N., Rhodes, P., Tucker, K. M., Williams, R., Healey, E., Wakefield, C. E. 2019; 28 (3): 516-532

  Abstract

  While family communication about a BRCA1 or BRCA2 (BRCA1/2) pathogenic variant can be a catalyst for the uptake of risk-reducing measures in young adults, disseminating information within families and across generations is complex. This study aimed to explore how young adults and their families communicate about a BRCA1/2 pathogenic variant, from a family systems perspective. In-depth family interviews and questionnaires (N = 67 individuals; 21 families) were completed at four metropolitan and regional genetic clinics in Australia. Data involved thematic analysis and interpretation based on family systems theory, including the use of standardized measures. Six key themes were identified and explored: (1) Responsibility to protect, (2) "It's a woman's problem," (3) Family culture influences communication, (4) Adversarial growth and connection, (5) Key events can be relational turning points, and (6) Health professionals can help. Family identities were solidified through the incorporation of a pathogenic variant in family scripts, while members of the family who held differing views to their families expressed less agreeableness and openness to disseminate information. The collective family's experience and perspective toward a pathogenic variant can influence a young adult's decision-making about genetic testing, risk-management, and family planning. The utilization of family therapy skills in routine practice would be helpful in facilitating communication and the inclusion of standardized measures is beneficial to identify individuals needing ongoing psychological support. Understanding relationship difficulties that arise from family members holding divergent views can offer insight into future research inquiry and areas of further training and clinical support.

  View details for DOI 10.1002/jgc4.1055

  View details for PubMedID 30694012

• How physically active do Australian and New Zealander childhood cancer survivors perceive themselves? A report from the ANZCHOG survivorship study. Complementary therapies in medicine Mizrahi, D., Fardell, J. E., Wakefield, C. E., Simar, D., Maguire, A. M., Hubbard, G., Cohn, R. J. 2019; 44: 196-203

  Abstract

  Childhood cancer survivors are at risk of treatment late-effects. Physical activity represents a necessary complementary therapy and modifiable risk-factor across all ages for many cardio-metabolic late-effects. This study assessed perceived physical activity in Australian and New Zealander childhood cancer survivors.We recruited parents of survivors aged <16 years, and adult survivors of childhood cancer aged ≥16 years, ≥5 years since diagnosis, with age-matched controls for comparison. We compared perceived moderate-vigorous physical activity between survivors and controls, using regression to identify associations with physical activity.We recruited 914 participants (570 childhood cancer survivors and 344 age-matched controls). Parents of survivors perceived more moderate-vigorous physical activity than child controls (248 ± 218, 95% Confidence Interval (CI) = 218-280 vs 185 ± 214 min/week, 95% CI = 144-225, p = 0.036), with no perceived difference between adult survivors and controls (125 ± 152, 95% CI = 108-140 vs 160 ± 201 min/week, 95% CI = 132-187, p = 0.477). Twenty-seven percent of child survivors (vs. 14.5% controls) and 30% of adult survivors (vs. 39.4% controls) met recommendations. Adult survivors who received radiotherapy (OR = 0.585, 95% CI = 0.343-0.995, p = 0.048) or not completed university (OR = 1.808, 95% CI = 1.071-3.053, p = 0.027) were less likely to meet recommendations.Over two-thirds of Australian and New Zealander childhood cancer survivors across all ages are perceived to not meet physical activity recommendations. Adult survivors who had radiotherapy or did not complete university appeared at-risk for low physical activity.Physical activity is important for everyone, but critical among childhood cancer survivors due to increased late cardio-metabolic risks. Monitoring survivors' perceived but also objectively measured physical activity as complementary to routine care is warranted, to provide education and motivate survivors to take control of their health.

  View details for DOI 10.1016/j.ctim.2019.04.020

  View details for PubMedID 31126556

• Author reply. Internal medicine journal Sansom-Daly, U. M., Wakefield, C. E., Hetherington, K., Evans, H. E., Ellis, S. J., McGill, B. C., Cohn, R. J. 2019; 49 (6): 808-809

  View details for DOI 10.1111/imj.14320

  View details for PubMedID 31185532

• The Role of Primary Care Physicians in Childhood Cancer Survivorship Care: Multiperspective Interviews. The oncologist Signorelli, C., Wakefield, C. E., Fardell, J. E., Foreman, T., Johnston, K. A., Emery, J., Thornton-Benko, E., Girgis, A., Lie, H. C., Cohn, R. J. 2019; 24 (5): 710-719

  Abstract

  Primary care physicians (PCPs) are well placed to provide holistic care to survivors of childhood cancer and may relieve growing pressures on specialist-led follow-up. We evaluated PCPs' role and confidence in providing follow-up care to survivors of childhood cancer.In Stage 1, survivors and parents (of young survivors) from 11 Australian and New Zealand hospitals completed interviews about their PCPs' role in their follow-up. Participants nominated their PCP for an interview for Stage 2. In Stage 2, PCPs completed interviews about their confidence and preparedness in delivering childhood cancer survivorship care.Stage 1: One hundred twenty survivors (36% male, mean age: 25.6 years) and parents of young survivors (58% male survivors, survivors' mean age: 12.7 years) completed interviews. Few survivors (23%) and parents (10%) visited their PCP for cancer-related care and reported similar reasons for not seeking PCP-led follow-up including low confidence in PCPs (48%), low perceived PCP cancer knowledge (38%), and difficulty finding good/regular PCPs (31%). Participants indicated feeling "disconnected" from their PCP during their cancer treatment phase. Stage 2: Fifty-one PCPs (57% male, mean years practicing: 28.3) completed interviews. Fifty percent of PCPs reported feeling confident providing care to childhood cancer survivors. PCPs had high unmet information needs relating to survivors' late effects risks (94%) and preferred a highly prescriptive approach to improve their confidence delivering survivorship care.Improved communication and greater PCP involvement during treatment/early survivorship may help overcome survivors' and parents' low confidence in PCPs. PCPs are willing but require clear guidance from tertiary providers.Childhood cancer survivors and their parents have low confidence in primary care physicians' ability to manage their survivorship care. Encouraging engagement in primary care is important to promote holistic follow-up care, continuity of care, and long-term surveillance. Survivors'/parents' confidence in physicians may be improved by better involving primary care physicians throughout treatment and early survivorship, and by introducing the concept of eventual transition to adult and primary services. Although physicians are willing to deliver childhood cancer survivorship care, their confidence in doing so may be improved through better communication with tertiary services and more appropriate training.

  View details for DOI 10.1634/theoncologist.2018-0103

  View details for PubMedID 30171066

  View details for PubMedCentralID PMC6516111

• Dietary intake and diet quality in children receiving treatment for cancer. Nutrition reviews Goddard, E., Cohen, J., Bramley, L., Wakefield, C. E., Beck, E. J. 2019; 77 (5): 267-277

  Abstract

  This narrative synthesis aims to examine the dietary intake, diet quality, and dietary preferences of pediatric cancer patients during cancer treatment. Thirteen studies were eligible for review. Studies mostly investigated nutrient intake, with 7 reporting on children's food intake. There was consensus among studies, which reported suboptimal fruit and vegetable intake and a preference for savory, carbohydrate-based foods. Results suggest that pediatric cancer patients consume a limited variety of foods, with a high intake of noncore foods. Future research should aim to examine dietary food data against dietary guidelines to assess adequacy and variety within core food groups.

  View details for DOI 10.1093/nutrit/nuy069

  View details for PubMedID 30715472

• Enrolment in paediatric oncology early-phase clinical trials: The health-care professionals' perspective. Journal of paediatrics and child health Robertson, E. G., Mitchell, R., Wakefield, C. E., Lewis, P., Cousens, N., Marshall, G. M., Russell, S. J., Ziegler, D. S., Anazodo, A. C., Trahair, T. N., Barbaric, D., Cohn, R. J., Alvaro, F., O'Brien, T. A. 2019; 55 (5): 561-566

  Abstract

  Approximately 20-30% of children/adolescents with cancer will not respond to standard therapies. These children are usually offered experimental treatment in the form of an early-phase clinical trial. We examined the perspectives of health-care professionals (HCPs) regarding obtaining informed consent for early-phase trials in paediatric oncology.We collected survey data from 87 HCPs working in paediatric cancer centres across Australia and New Zealand.HCPs were, on average, 44 years old (range = 25-74), with 15.8 years' experience in paediatric oncology (range = 1-40). Few HCPs (17.4%) received training for early-phase trial consent; however, most were willing to attend training (77.9%). HCPs (61.6%) reported that they informed families about early-phase trials without any attempt to influence their decision. However, 23.3% of HCPs reported that they informed families that their child would benefit. HCPs' main obstacle in obtaining consent was their perception of parents' eagerness to 'try anything' (52.3%). HCPs perceived that many parents misunderstood key clinical trials concepts, with 25.2% of HCPs believing that not being given clear information influenced parents' decisions. Physicians were more likely than social workers/nurses to inform families that other children will benefit from enrolment in the study. Social workers/nurses appeared to rate the chance of benefits for the patient higher than physicians.HCPs may experience difficulty conducting early-phase trial consultations and obtaining valid informed consent. Our study highlights the need for formal training for HCPs and additional patient education tools.

  View details for DOI 10.1111/jpc.14248

  View details for PubMedID 30288839

• Are we meeting the training needs of healthcare and education professionals supporting children with cancer in their return to school? Pediatric blood & cancer Ellis, S. J., Fardell, J. E., Wakefield, C. E., Schilstra, C. E., Burns, M. A., Donnan, B., Walwyn, T., Lum, A., Marshall, G., Carter, A., Barton, B., Cohn, R. J. 2019; 66 (4): e27575

  View details for DOI 10.1002/pbc.27575

  View details for PubMedID 30537149

• Perceptions of future health and cancer risk in adult survivors of childhood cancer: Implications for engagement in follow-up care. Cancer Signorelli, C., Wakefield, C. E., Fardell, J. E., Brierley, M. E., Darlington, A. S., Williamson, J., Downie, P., Cohn, R. J. 2019; 125 (6): 1008-1009

  View details for DOI 10.1002/cncr.31934

  View details for PubMedID 30624781

• Comorbidity of distress experienced by parents of childhood cancer survivors points to the importance of understanding transdiagnostic cognitive-affective mechanisms. Acta oncologica (Stockholm, Sweden) Vetsch, J., McGill, B. C., Sansom-Daly, U. M., Hetherington, K., Ellis, S. J., Marshall, K. H., Wakefield, C. E. 2019; 58 (2): 189-190

  View details for DOI 10.1080/0284186X.2018.1512157

  View details for PubMedID 30264637

• Feasibility, acceptability, and safety of the Recapture Life videoconferencing intervention for adolescent and young adult cancer survivors. Psycho-oncology Sansom-Daly, U. M., Wakefield, C. E., Bryant, R. A., Patterson, P., Anazodo, A., Butow, P., Sawyer, S. M., McGill, B. C., Evans, H. E., Cohn, R. J. 2019; 28 (2): 284-292

  Abstract

  Online psychological therapies provide a way to connect adolescent and young adult (AYA) cancer survivors to evidence-based support. We aimed to establish the feasibility, acceptability, and safety of Recapture life, a six-session group-based online cognitive-behavioural intervention, led by a facilitator, for AYAs in the early post-treatment period.A randomised-controlled trial compared Recapture Life to an online peer-support group control and a waitlist control. Participants could nominate a support person. Acceptability was assessed using study opt-in and retention rates, participant-reported benefits/burdens of participation, and group facilitator burden. We also assessed the feasibility (eg, frequency/impact of technological difficulties) and psychological safety (ie, occurrence of clinically concerning distress) of the program.Sixty-one participants took part (45 AYAs, 51.1% female; 19 support people). The opt-in rate was 30%, the enrolment rate was 87%, and 75% of participants took part in ≥5/6 sessions. AYAs reported high benefit and low burden of participation. Overall, 95 online group sessions were conducted; few required rescheduling by group facilitators (3%), but many took place outside of office hours (~90 hours). It took 40 days on average to create online groups, but established weekly sessions commenced quickly (M = 4.0 minutes). Technological difficulties were common but had a low impact on intervention delivery. Although 54% of AYAs returned a clinically concerning distress screen at some point, none reflected acute mental health risks.The data largely indicate that Recapture Life is an acceptable, feasible, and safe model of evidence-based psychological support for AYAs during early survivorship, which nevertheless experienced common challenges in online/AYA intervention delivery.

  View details for DOI 10.1002/pon.4938

  View details for PubMedID 30414219

• Development of Breast Cancer Choices: a decision support tool for young women with breast cancer deciding whether to have genetic testing for BRCA1/2 mutations. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Grimmett, C., Brooks, C., Recio-Saucedo, A., Armstrong, A., Cutress, R. I., Gareth Evans, D., Copson, E., Turner, L., Meiser, B., Wakefield, C. E., Eccles, D., Foster, C. 2019; 27 (1): 297-309

  Abstract

  To develop a decision support tool for young women with breast cancer considering genetic testing for BRCA1/2 mutations soon after cancer diagnosis.A four-stage iterative development process was employed; stage 1, literature review exploring the availability and efficacy of empirically tested decision support tools; stage 2, in-depth interviews with 29 young women (< 50 years) recently diagnosed with breast cancer, exploring information requirements and experiences of genetic testing decision making; stage 3, three focus groups (N = 21) exploring preferences for information presentation and prioritisation of content; stage 4, think-aloud interviews to refine the prototype (N = 16).Participants wanted information regarding the pros and cons of testing, the testing process and implications for their family, presented in a way that allowed them to choose the level of detail they required. They preferred the term 'altered gene', valued a medical word definition function and warnings before accessing sensitive information.Participants valued the decision support tool, the accessibility of the information and its clinical endorsement. The decision support tool has considerable clinical utility as an adjunct to genetic counselling or for use in busy oncology clinics where formal genetic counselling may be unavailable.

  View details for DOI 10.1007/s00520-018-4307-x

  View details for PubMedID 29955974

• Families' and health care professionals' attitudes towards Li-Fraumeni syndrome testing in children: A systematic review. Clinical genetics Warby, M., Wakefield, C. E., Vetsch, J., Tucker, K. M. 2019; 95 (1): 140-150

  Abstract

  Li-Fraumeni syndrome (LFS) is a highly penetrant cancer predisposition syndrome caused by germline TP53 mutations. Genetic testing is not routinely offered in asymptomatic children at risk of the condition as the benefits are debatable and the attitudes of families and health care professionals (HCPs) may vary. This review assessed the attitudes of families and HCPs towards offering genetic testing to children for LFS, with a focus on perceived advantages and disadvantages and involvement of children in the decision-making process. We searched three key databases (Medline, PsycINFO and EMBASE) to identify quantitative and qualitative studies. We screened 729 articles identifying eight studies for detailed review. Most parents perceived TP53 genetic testing to be beneficial in childhood, despite previous lack of surveillance guidelines. Parents raised some concerns, including decreased insurability and diminishing the child's autonomy. Most children tested reported no negative emotional concerns after testing, even if tested positive. Despite generally positive interest clinicians remain hesitant. Most families saw the value in involving children in decision-making. Families' acceptance of TP53 testing in childhood was high. This review highlights the need for research on the long-term psychosocial impacts of testing and the attitudes of families to be reflected in professional guidelines.

  View details for DOI 10.1111/cge.13442

  View details for PubMedID 30191952

• Adolescent and young adult cancer survivors' memory and future thinking processes place them at risk for poor mental health. Psycho-oncology Sansom-Daly, U. M., Wakefield, C. E., Robertson, E. G., McGill, B. C., Wilson, H. L., Bryant, R. A. 2018; 27 (12): 2709-2716

  Abstract

  Identity formation is a key developmental milestone for adolescents and young adults (AYAs). Autobiographical memory and future-thinking are crucial cognitive processes underpinning this, which may be impacted by cancer experiences. We know little about how these processes might be related to AYAs' adjustment to cancer, quality of life (QoL), and mental health outcomes.We examined autobiographical memory and future-thinking processes, and their relationship with mental health outcomes, among 77 AYA cancer survivors (Mage  = 22.3 years, 59.7% female), compared with 62 community-based controls (Mage  = 23.3 years, 50% female). Participants completed the Life Narratives Interview, Future Imaginings Task, measures assessing depression, anxiety, QoL, and cancer-related identity. We coded two facets of autobiographical thinking: thematic content and specificity.Relative to controls, survivors recounted more negative life narratives (P = .000). Survivors' memories and future lives were more health/illness-focused (P = .000) and they remembered past events with greater specificity (P = .007) than controls. In contrast, survivors imagined their future lives with less specificity than controls (P = .000). Regression analyses highlighted that being female, greater identification as a "cancer survivor," worse depression, and recent cancer treatment-completion significantly predicted maladaptive autobiographical thinking processes.These findings point to key modifiable cognitive processes relevant to AYAs' cancer-related adjustment and future mental health. To bolster resilience into longer-term survivorship, clinicians could adapt existing evidence-based, cognitive-behavioural interventions to assist AYAs to imagine future events in greater detail.

  View details for DOI 10.1002/pon.4856

  View details for PubMedID 30109738

• Talking About Cancer Among Adolescent and Young Adult Cancer Patients and Survivors: A Systematic Review. Journal of adolescent and young adult oncology Janin, M. M., Ellis, S. J., Wakefield, C. E., Fardell, J. E. 2018; 7 (5): 515-524

  Abstract

  Communication plays an essential role in social relationships. Yet it is unclear how young cancer patients and survivors communicate with peers, and whether this contributes to increased rates of social difficulties. We aimed to analyze how childhood cancer patients and survivors communicate about their cancer with family and peers. We systematically searched Medline, Embase and PsycINFO for peer-reviewed studies on cancer-related communication among patients and survivors (any cancer, <25 years at diagnosis). We screened 309 articles, and included 6 qualitative studies. Studies were assessed using a standardized quality assessment tool. Participants were adolescents and young adults, 16-34 years of age at the time of study. Included studies related to different forms of cancer-related communication, benefits, and challenges. We found that cancer-related communication was an individual, complex process, addressing medical, existential, and emotional aspects of cancer. Communication occurred on a spectrum with variation in who information was shared with, as well as differences in the frequency at which information was shared, and the amount and type of information shared. Communication often occurred at uncertain or significant times for participants, or was initiated by others. Communicating about cancer yielded benefits as a coping strategy, prompted social support, and appeared central to significant relationships. Barriers to communication, including fear of stigma and poor peer reactions, hindered willingness to disclose. The number of studies analyzing this topic was limited. Communicating about cancer is a significant yet complex process for young patients and survivors. Further research is needed to complement the existing literature and to establish the evidence base for the development of future effective interventions promoting social and communication skills.

  View details for DOI 10.1089/jayao.2017.0131

  View details for PubMedID 29851370

• Protocol for the avatar acceptability study: a multiperspective cross-sectional study evaluating the acceptability of using patient-derived xenografts to guide personalised cancer care in Australia and New Zealand. BMJ open Wakefield, C. E., Doolan, E. L., Fardell, J. E., Signorelli, C., Quinn, V. F., Tucker, K. F., Patenaude, A. F., Marshall, G. M., Lock, R. B., Georgiou, G., Cohn, R. J. 2018; 8 (8): e024064

  Abstract

  Patient-derived xenografts (PDXs) have the potential to transform personalised cancer care, however, little is known about the acceptability of using PDXs to guide treatment decision-making. Given that patient and community preferences can influence satisfaction with care as well as the success of new technologies, we will evaluate the acceptability of PDXs in individuals affected by cancer and community comparisons.This comparative cross-sectional study will recruit 323 individuals affected by cancer (cancer survivors (of childhood or adult cancer) and parents of childhood cancer survivors) and 323 community comparisons (adults and parents). We will collect data via structured interviews and questionnaires. To determine the acceptability of PDXs, we will assess five domains: willingness to use PDXs when/if diagnosed with cancer, perceived advantages and disadvantages of PDXs, maximum acceptable out-of-pocket costs per patient, maximum acceptable turnaround time to receive results and maximum acceptable number of mice sacrificed per patient. The primary endpoint will be participants' decisional balance ratio (calculated as participants' advantages ratings divided by perceived disadvantages ratings).The study protocol has been approved by the South Eastern Sydney Local Health District Human Research Ethics Committee (HREC:12/173) and UNSW Sydney (HC15773). The results will be disseminated in peer-reviewed journals and at scientific conferences. A lay summary will be published on the Behavioural Sciences Unit website.

  View details for DOI 10.1136/bmjopen-2018-024064

  View details for PubMedID 30093523

  View details for PubMedCentralID PMC6089310

• Attitudes and experiences of childhood cancer survivors transitioning from pediatric care to adult care. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Nandakumar, B. S., Fardell, J. E., Wakefield, C. E., Signorelli, C., McLoone, J. K., Skeen, J., Maguire, A. M., Cohn, R. J. 2018; 26 (8): 2743-2750

  Abstract

  Survivors of pediatric cancer are prone to late effects which require ongoing medical care. Young adult survivors often transition from specialist pediatric care to adult-oriented or community-based healthcare. This study aims to describe the attitudes and experiences of survivors and their parents towards transition barriers and enablers.Long-term survivors and parents (of survivors < 16 years) were recruited from 11 hospitals in Australia and New Zealand to participate in a semi-structured telephone interview regarding their transition experiences. Transcribed interviews were coded and content analysis was used to number participants within themes.Thirty-three participants were interviewed, of which 18 were survivors (mean age 26 years, SD = 6.3; mean time since treatment completion 13.3 years, SD = 6.1) and 15 were parents (mean survivor age 15 years, SD = 1.9; mean time since treatment completion 8.4 years, SD = 2.8). Participants described their transition attitudes as positive (55%), neutral (15%), or negative (30%). Key barriers to transition included dependence on pediatric healthcare providers, less confidence in primary care physicians (PCPs), inadequate communication, and cognitive difficulty. Enablers included confidence in and proximity to physicians, good communication, information, independence, and age.Many survivors face barriers to their transition out of pediatric care. Early introduction to transition, greater collaboration between healthcare professionals, and better information provision to survivors may improve the transition process. Future research of survivors' experience of barriers/enablers to transition is needed. Development of interventions, such as those that address self-management skills, is required to facilitate transition and encourage long-term engagement.

  View details for DOI 10.1007/s00520-018-4077-5

  View details for PubMedID 29500581

• Parents' Perspectives on Their Child's Social Experience in the Context of Childhood Chronic Illness: A Qualitative Study. Journal of pediatric nursing Janin, M. M., Ellis, S. J., Lum, A., Wakefield, C. E., Fardell, J. E. 2018; 42: e10-e18

  Abstract

  Many children suffer from a serious chronic illness. These children have greater risks of developing psychosocial difficulties, associated with school absenteeism and missed social opportunities. Through parents' perspectives, this study aimed to gain a holistic understanding of children's social experience in the context of chronic illness.We conducted semi-structured interviews with parents of a child with a serious chronic illness exploring their child's school experience. Two researchers coded social experiences using an iterative process, involving regular team discussions. Theoretical thematic analysis and content analysis were both performed, using the social ecological model as a theoretical framework.Forty-nine parents participated (43 mothers, 6 fathers; child mean age 11.51 years; 21 female children, 28 male children; 6 different chronic illness groups). According to parents, the main facilitators to the social experience of their children involved parents themselves, the school, social networks and peers, as they were all able to provide social support and opportunities for social development. However, peers were also a source of bullying and peer pressure, and sometimes lacked understanding and empathy.As shown by the social ecological model, social functioning between chronically-ill children and their peers can be influenced by many factors. More specifically, parents have expressed their ability for promoting positive experiences between their children and their peers. Practice Implications Considering the complexity of social functioning, future research and interventions should provide holistic support for children with chronic illnesses.

  View details for DOI 10.1016/j.pedn.2018.06.010

  View details for PubMedID 30220375

• Strategies to facilitate shared decision-making about pediatric oncology clinical trial enrollment: A systematic review. Patient education and counseling Robertson, E. G., Wakefield, C. E., Signorelli, C., Cohn, R. J., Patenaude, A., Foster, C., Pettit, T., Fardell, J. E. 2018; 101 (7): 1157-1174

  Abstract

  We conducted a systematic review to identify the strategies that have been recommended in the literature to facilitate shared decision-making regarding enrolment in pediatric oncology clinical trials.We searched seven databases for peer-reviewed literature, published 1990-2017. Of 924 articles identified, 17 studies were eligible for the review. We assessed study quality using the 'Mixed-Methods Appraisal Tool'. We coded the results and discussions of papers line-by-line using nVivo software. We categorized strategies thematically.Five main themes emerged: 1) decision-making as a process, 2) individuality of the process; 3) information provision, 4) the role of communication, or 5) decision and psychosocial support. Families should have adequate time to make a decision. HCPs should elicit parents' and patients' preferences for level of information and decision involvement. Information should be clear and provided in multiple modalities. Articles also recommended providing training for healthcare professionals and access to psychosocial support for families.High quality, individually-tailored information, open communication and psychosocial support appear vital in supporting decision-making regarding enrollment in clinical trials. These data will usefully inform future decision-making interventions/tools to support families making clinical trial decisions.A solid evidence-base for effective strategies which facilitate shared decision-making is needed.

  View details for DOI 10.1016/j.pec.2018.02.001

  View details for PubMedID 29455939

• Cancer-Related Genetic Testing and Personalized Medicine for Adolescents: A Narrative Review of Impact and Understanding. Journal of adolescent and young adult oncology Vetsch, J., Wakefield, C. E., Warby, M., Tucker, K., Patterson, P., McGill, B. C., Metcalfe, A., Cohn, R. J., Fardell, J. E. 2018; 7 (3): 259-262

  Abstract

  Genetic testing is becoming increasingly available for adolescents who are undergoing cancer treatment or at risk of cancer predisposition syndromes. With this narrative review, we aimed to synthesize the evidence on psychosocial outcomes and adolescents' understanding of genetic testing-thus far, an underresearched topic. Both psychological benefits and harms of predictive testing were reported in adolescents from high-risk families. Harms were mainly related to cancer-specific distress and increased worries. Findings on genetic understanding were sparse. Future studies should focus on psychosocial outcomes and adolescents' understanding undergoing genetic testing and enabling access to genetic counseling pre-testing and post-testing.

  View details for DOI 10.1089/jayao.2017.0102

  View details for PubMedID 29336661

• Design and Rationale for a Parent-Led Intervention to Increase Fruit and Vegetable Intake in Young Childhood Cancer Survivors (Reboot): Protocol for a Pilot Study. JMIR research protocols Touyz, L., Cohen, J., Wakefield, C., Grech, A., Garnett, S., Gohil, P., Cohn, R. 2018; 7 (5): e129

  Abstract

  Poor dietary habits are common among childhood cancer survivors, despite increasing their risk of cardio metabolic complications after cancer treatment. Here, we describe the design and rationale for a pilot telephone-based, parent-led intervention aimed at increasing fruit and vegetable intake in young cancer survivors (Reboot).This pilot study aims to assess the feasibility and acceptability of delivering evidence-based telephone support to parents of childhood cancer survivors. A secondary aim includes assessing the effect of Reboot on improving childhood cancer survivors' dietary quality by increasing child fruit and vegetable intake and variety and its contribution to overall nutrient intake.We aim to recruit parents of 15 young cancer survivors aged 2 to 12 years who have completed cancer treatment less than five years ago. The intervention comprises of 4 weekly 45-minute telephone sessions led by a health professional and one booster session 6 weeks later. Sessions address the effects of cancer treatment on children's diets, recommended fruit and vegetable intake for children, and evidence-based strategies to promote the consumption of fruit and vegetables as well as to manage fussy eating.Reboot is based on an existing, evidence-based parent nutrition intervention and modified for childhood cancer survivors following extensive collaboration with experts in the field. Primary outcomes of feasibility and acceptability will be measured by the number of participants who complete all five sessions, average session length (minutes), length between sessions (days) and parent Likert ratings of the usefulness and impact of the intervention collected after the booster session. Of the 15 participants we aim to recruit, 3 have completed the intervention, 1 declined to participate, 11 are actively completing the intervention and 2 participants are providing written consent. The remaining 3 participants will be recruited via telephone follow-up calls. The intervention is due to be completed by July 2018.Reboot aims to support healthy dietary behaviors in childhood cancer survivors who are at increased risk of developing serious cardiometabolic complications after their cancer treatment. Results will inform the development and implementation of future evidence-based dietary interventions delivered to childhood cancer survivors, particularly those living in rural and remote areas.RR1-10.2196/9252.

  View details for DOI 10.2196/resprot.9252

  View details for PubMedID 29769170

  View details for PubMedCentralID PMC5976864

• The Development of Delta: Using Agile to Develop a Decision Aid for Pediatric Oncology Clinical Trial Enrollment. JMIR research protocols Robertson, E. G., Wakefield, C. E., Cohn, R. J., O'Brien, T., Ziegler, D. S., Fardell, J. E. 2018; 7 (5): e119

  Abstract

  The internet is increasingly being used to disseminate health information. Given the complexity of pediatric oncology clinical trials, we developed Delta, a Web-based decision aid to support families deciding whether or not to enroll their child with cancer in a clinical trial.This paper details the Agile development process of Delta and user testing results of Delta.Development was iterative and involved 5 main stages: a requirements analysis, planning, design, development, and user testing. For user testing, we conducted 13 eye-tracking analyses and think-aloud interviews with health care professionals (n=6) and parents (n=7).Results suggested that there was minimal rereading of content and a high level of engagement in content. However, there were some navigational problems. Participants reported high acceptability (12/13) and high usability of the website (8/13).Delta demonstrates the utility for the use of Agile in the development of a Web-based decision aid for health purposes. Our study provides a clear step-by-step guide to develop a Web-based psychosocial tool within the health setting.

  View details for DOI 10.2196/resprot.9258

  View details for PubMedID 29728347

  View details for PubMedCentralID PMC5960036

• 'Re-engage' pilot study protocol: a nurse-led eHealth intervention to re-engage, educate and empower childhood cancer survivors. BMJ open Signorelli, C., Wakefield, C. E., Johnston, K. A., Fardell, J. E., Brierley, M. E., Thornton-Benko, E., Foreman, T., Webber, K., Wallace, W. H., Cohn, R. J. 2018; 8 (4): e022269

  Abstract

  Many childhood cancer survivors are disengaged from cancer-related follow-up care despite being at high risk of treatment-related late effects. Innovative models of long-term follow-up (LTFU) care to manage ongoing treatment-related complications are needed. 'Re-engage' is a nurse-led eHealth intervention designed to improve survivors' health-related self-efficacy, targeted at survivors disengaged from follow-up. Re-engage aims to overcome survivor- and parent-reported barriers to care and ensure survivors receive the care most appropriate to their risk level.This study will recruit 30 Australian childhood cancer survivors who are not receiving any cancer-related care. Participation involves two online/telephone consultations with a survivorship nurse for medical assessment, a case review, risk stratification and creation of a care plan by a multidisciplinary team of specialists. We will assess the feasibility of implementing 'Re-engage' and its acceptability to participants and health professionals involved. The primary outcome will be survivors' health-related self-efficacy, measured at baseline and 1 and 6 months postintervention. Secondary outcomes will include the effect of 'Re-engage' on survivors' health behaviours and beliefs, engagement in healthcare, information needs and emotional well-being. We will also document the cost per patient to deliver 'Re-engage'. If Re-engage is acceptable, feasible and demonstrates early efficacy, it may have the potential to empower survivors in coordinating their complex care, improving survivors' long-term engagement and satisfaction with care. Ideally, it will be implemented into clinical practice to recall survivors lost to follow-up and reduce the ongoing burden of treatment for childhood cancer.The study protocol has been approved by the South Eastern Sydney Local Health District Human Research Ethics Committee (reference number: 16/366). The results will be disseminated in peer-reviewed journals and at scientific conferences. A lay summary will be published on the Behavioural Sciences Unit website.ACTRN12618000194268.

  View details for DOI 10.1136/bmjopen-2018-022269

  View details for PubMedID 29654052

  View details for PubMedCentralID PMC5898358

• Family history-taking practices and genetic confidence in primary and tertiary care providers for childhood cancer survivors. Pediatric blood & cancer Wakefield, C. E., Quinn, V. F., Fardell, J. E., Signorelli, C., Tucker, K. M., Patenaude, A. F., Malkin, D., Walwyn, T., Alvaro, F., Cohn, R. J. 2018; 65 (4)

  Abstract

  There is growing impetus for increased genetic screening in childhood cancer survivors. Family history-taking is a critical first step in determining survivors' suitability. However, the family history-taking practices of providers of pediatric oncology survivorship care and the confidence of these providers to discuss cancer risks to relatives are unknown.Fifty-four providers completed semistructured interviews in total, which included eight tertiary providers representing nine hospitals across two countries (63% male, 63% oncologists, 37% nurses) and 46 primary care providers (PCPs) nominated by a survivor (59% male, 35% regional practice). We used content analysis and descriptive statistics/regression to analyze the data.Few tertiary (38%) or primary (35%) providers regularly collected survivors' family histories, often relying on survivors/parents to initiate discussions. Providers mostly took two-generation pedigrees (63% tertiary and 81% primary). Primary providers focused on adult cancers. Lack of time, alternative priorities, and perceived lack of relevance were common barriers. Half of all tertiary providers felt moderately comfortable discussing genetic cancer risk to children of survivors (88% felt similarly discussing risks to other relatives). Most primary providers lacked confidence: 41% felt confident regarding risks to survivors' children and 48% regarding risks to other relatives.While family history-taking will not identify all survivors suitable for genetics assessment, recommendations for regular history-taking are not being implemented in tertiary or primary care. Additional PCP-targeted genetic education is warranted given that they are well placed to review family histories of pediatric cancer survivors.

  View details for DOI 10.1002/pbc.26923

  View details for PubMedID 29286558

• Narrative Review of the Educational, Vocational, and Financial Needs of Adolescents and Young Adults with Cancer: Recommendations for Support and Research. Journal of adolescent and young adult oncology Fardell, J. E., Wakefield, C. E., Patterson, P., Lum, A., Cohn, R. J., Pini, S. A., Sansom-Daly, U. M. 2018; 7 (2): 143-147

  Abstract

  Adolescents and young adults (AYAs) with cancer have unique needs around education and vocation during and after treatment. This narrative review series aims at documenting the unique needs of AYAs from the current literature and at providing recommendations to inform an update of the Australian National Service Delivery Framework for AYAs with Cancer. AYAs with cancer may experience impairments to cognitive, physical, and psychological functioning and health, which can adversely affect their academic grades, peer relationships, and likelihood of entering the workforce. Treatment expenses and time off work can stifle AYAs' financial independence from their parents. The combined effect of disrupted education, vocation, and financial dependence can reduce AYAs' sense of identity. Although support is available in some countries, support efficacy is yet to be clearly established. Continued research is required to deliver successful education and work reintegration programs that build the confidence of AYAs with cancer to achieve their best. Educational and vocational support, as well as financial advice, may improve AYAs' financial security and quality of life during survivorship.

  View details for DOI 10.1089/jayao.2017.0086

  View details for PubMedID 29125906

• A Narrative Review of Models of Care for Adolescents and Young Adults with Cancer: Barriers and Recommendations. Journal of adolescent and young adult oncology Fardell, J. E., Patterson, P., Wakefield, C. E., Signorelli, C., Cohn, R. J., Anazodo, A., Zebrack, B., Sansom-Daly, U. M. 2018; 7 (2): 148-152

  Abstract

  Adolescents and young adults (AYAs) with cancer have unique cancer care needs that differ significantly from younger and older cancer patients. There has been an increasing appreciation for this unique group of patients internationally, with a rise in research and establishment of innovative models of care dedicated to addressing their needs. This narrative review identifies common elements and barriers to care for AYA cancer patients and survivors, and offers recommendations for developing clinical care models for this age-defined population.

  View details for DOI 10.1089/jayao.2017.0100

  View details for PubMedID 29298105

• Parent-targeted home-based interventions for increasing fruit and vegetable intake in children: a systematic review and meta-analysis. Nutrition reviews Touyz, L. M., Wakefield, C. E., Grech, A. M., Quinn, V. F., Costa, D. S., Zhang, F. F., Cohn, R. J., Sajeev, M., Cohen, J. 2018; 76 (3): 154-173

  Abstract

  Parent interventions delivered in the home represent a valuable approach to improving children's diets.This review aims to examine the effectiveness of parent-targeted in-home interventions in increasing fruit and vegetable intake in children.Five electronic databases were searched: MEDLINE, Embase, PubMed, CINAHL, and PsycINFO.Randomized and nonrandomized trials conducted in children aged 2 to 12 years and published in English from 2000 to 2016 were eligible.Eighteen publications were reviewed, and 12 randomized trials were analyzed. Studies were pooled on the basis of outcome measure and type of intervention, resulting in 3 separate meta-analyses.Nutrition education interventions resulted in a small but significant increase in fruit intake (Hedges' g = 0.112; P = 0.028). Taste exposure interventions led to a significant increase in vegetable intake, with a moderate effect (Hedges' g = 0.438; P < 0.001). Interventions involving daily or weekly sessions reported positive outcomes more frequently than those using monthly sessions.Future interventions should incorporate regular taste exposure to maximize increases in vegetable intake in children. This is particularly important because fewer children meet national recommendations for vegetable intake than for fruit intake.

  View details for DOI 10.1093/nutrit/nux066

  View details for PubMedID 29319789

• Barriers and facilitators of exercise experienced by cancer survivors: a mixed methods systematic review. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Clifford, B. K., Mizrahi, D., Sandler, C. X., Barry, B. K., Simar, D., Wakefield, C. E., Goldstein, D. 2018; 26 (3): 685-700

  Abstract

  Exercise has been shown to improve the health and well-being of people who have survived cancer. Yet, less than 40% of cancer survivors in Australia meet the recommended 150 min of moderate-intensity physical activity per week. Our objective was to systematically review the literature regarding barriers, facilitators and preferences for exercise for survivors of cancer.MEDLINE, EMBASE, CINAHL, PsycINFO and Scopus were searched for qualitative and quantitative articles addressing barriers, facilitators and preferences for exercise in cancer survivors. Quality assessment was performed by two independent reviewers using the Mixed Methods Appraisal Tool. Thomas and Harden's method of thematic synthesis was used to amalgamate qualitative data while descriptive statistics were used to collate quantitative data.Nineteen studies were included (9 qualitative and 10 quantitative). Persisting treatment-related side effects was the most commonly reported barrier to initiating or maintaining exercise, followed by lack of time and fatigue. The most common facilitators of exercise were gaining a feeling of control over their health as well as managing emotions and mental well-being, while the preferred method of exercise was walking. We also identified a lack of useful information provided to survivors regarding exercise.Treatment-related side effects, lack of time and fatigue were key barriers to exercise for survivors of varied cancer types. Insufficient patient education may contribute to the belief that exercise is not helpful when experiencing side effects of treatment, including fatigue. Identifying barriers and facilitators leads to improved support and education from health professionals which is required to provide safe and effective exercise recommendations for survivors.

  View details for DOI 10.1007/s00520-017-3964-5

  View details for PubMedID 29185105

• Educational and vocational goal disruption in adolescent and young adult cancer survivors. Psycho-oncology Vetsch, J., Wakefield, C. E., McGill, B. C., Cohn, R. J., Ellis, S. J., Stefanic, N., Sawyer, S. M., Zebrack, B., Sansom-Daly, U. M. 2018; 27 (2): 532-538

  Abstract

  Cancer in adolescents and young adults (AYAs) can interrupt important developmental milestones. Absence from school and time lost from work, together with the physical impacts of treatment on energy and cognition, can disrupt educational and vocational goals. The purpose of this paper is to report on AYA cancer survivors' experiences of reintegration into school and/or work and to describe perceived changes in their educational and vocational goals.Adolescents and young adults recruited from 7 hospitals in Australia, aged 15 to 26 years and ≤24 months posttreatment, were interviewed using the psychosocial adjustment to illness scale. Responses were analysed to determine the extent of, and explanations for, cancer's effect on school/work.Forty-two AYA cancer survivors (50% female) participated. Compared with their previous vocational functioning, 12 (28.6%) were scored as experiencing mild impairment, 14 (33.3%) moderate impairment, and 3 (7.1%) marked impairment. Adolescents and young adults described difficulties reintegrating to school/work as a result of cognitive impacts such as concentration problems and physical impacts of their treatment, including fatigue. Despite these reported difficulties, the majority indicated that their vocation goals were of equal or greater importance than before diagnosis (26/42; 62%), and most AYAs did not see their performance as compromised (23/42; 55%). Many survivors described a positive shift in life goals and priorities. The theme of goal conflict emerged where AYAs reported compromised abilities to achieve their goals.The physical and cognitive impacts of treatment can make returning to school/work challenging for AYA cancer survivors. Adolescents and young adults experiencing difficulties may benefit from additional supports to facilitate meaningful engagement with their chosen educational/vocational goals.

  View details for DOI 10.1002/pon.4525

  View details for PubMedID 28778113

• Adolescent and Young Adult Cancer Survivors' Experiences of the Healthcare System: A Qualitative Study. Journal of adolescent and young adult oncology May, E. A., McGill, B. C., Robertson, E. G., Anazodo, A., Wakefield, C. E., Sansom-Daly, U. M. 2018; 7 (1): 88-96

  Abstract

  To qualitatively examine the experiences of diagnosis and treatment, and attitudes toward ongoing healthcare of adolescent and young adult (AYA) survivors of AYA cancer, to determine barriers to healthcare engagement in the early survivorship period.Forty-two participants aged between 15 and 25 years were recruited between February 2013 and October 2015 as part of a larger Australia-wide study. This study analyzed data collected through a semistructured telephone interview. Interviews were recorded and transcribed verbatim and then coded line-by-line. Data were analyzed for emergent themes using the qualitative software NVivo.Many participants demonstrated a good understanding of their cancer diagnosis and treatment. Participants expressed high levels of confidence in their healthcare teams and demonstrated a conscientious approach to their ongoing cancer-specific and general healthcare. However, most AYAs had expectations of the cancer journey that differed from the realities of their experiences.The results further highlight the crucial role of healthcare professionals in ensuring AYA cancer patients have accurate expectations of diagnosis and treatment, and develop a strong working knowledge of their disease that is maintained into survivorship. AYA cancer survivors may require ongoing education and support to stay engaged with long-term follow-up care.

  View details for DOI 10.1089/jayao.2017.0015

  View details for PubMedID 28737997

• Recruiting primary care physicians to qualitative research: Experiences and recommendations from a childhood cancer survivorship study. Pediatric blood & cancer Signorelli, C., Wakefield, C. E., Fardell, J. E., Thornton-Benko, E., Emery, J., McLoone, J. K., Cohn, R. J. 2018; 65 (1)

  Abstract

  Primary care physicians (PCPs) are essential for healthcare delivery but can be difficult to recruit to health research. Low response rates may impact the quality and value of data collected. This paper outlines participant and study design factors associated with increased response rates among PCPs invited to participate in a qualitative study at Sydney Children's Hospital, Australia.We invited 160 PCPs by post, who were nominated by their childhood cancer patients in a survey study. We followed-up by telephone, email, or fax 2 weeks later.Without any follow-up, 32 PCPs opted in to the study. With follow-up, a further 42 PCPs opted in, with email appearing to be the most effective method, yielding a total of 74 PCPs opting in (46.3%). We reached data saturation after 51 interviews. On average, it took 34.6 days from mail-out to interview completion. Nonrespondents were more likely to be male (P = 0.013). No survivor-related factors significantly influenced PCPs' likelihood of participating. Almost double the number of interviews were successfully completed if scheduled via email versus phone. Those requiring no follow-up did not differ significantly to late respondents in demographic/survivor-related characteristics.PCP factors associated with higher opt in rates, and early responses, may be of interest to others considering engaging PCPs and/or their patients in cancer-related research, particularly qualitative or mixed-methods studies. Study resources may be best allocated to email follow-up, incentives, and personalization of study documents linking PCPs to patients. These efforts may improve PCP participation and the representativeness of study findings.

  View details for DOI 10.1002/pbc.26762

  View details for PubMedID 28940908

• School Experiences of Siblings of Children with Chronic Illness: A Systematic Literature Review. Journal of pediatric nursing Gan, L. L., Lum, A., Wakefield, C. E., Nandakumar, B., Fardell, J. E. 2017; 33: 23-32

  Abstract

  Siblings of children with chronic illness have unique experiences that can affect their school functioning, such that they may miss ongoing periods of school, experience difficulties with schoolwork or experience changes in their peer and teacher interactions. This review provides an overview of these siblings' school experiences.Six databases (Medline, PsychINFO, CINAHL, ERIC, Embase and The Cochrane Library) were systematically searched for studies examining the school experiences and peer relationships of siblings of children with chronic illness, as well as school-based interventions for these siblings. Studies were included if they were published in or after 2000 and were published in English.We identified 2137 articles upon initial search. From these, we identified 28 eligible studies examining the school experiences of >1470 siblings of children with chronic illness.Three key themes were identified throughout the reviewed articles. The literature described 1) the psychological impact on siblings at school; 2) decreases in school attendance and academic functioning, and; 3) changes or perceived differences in peer and teacher interactions. Siblings value teacher and peer support, and this support may contribute to better sibling school functioning.Many siblings are socially resilient, yet overlooked, members of the family who may present with psychological, academic and peer related difficulties at school following diagnosis of a brother or sister with chronic illness.Future research is needed to further delineate the sibling school experience to better facilitate the development of targeted sibling support interventions within the school environment.

  View details for DOI 10.1016/j.pedn.2016.11.007

  View details for PubMedID 27986373

• Study protocol for Enhancing Parenting In Cancer (EPIC): development and evaluation of a brief psycho-educational intervention to support parents with cancer who have young children. Pilot and feasibility studies Stafford, L., Sinclair, M., Turner, J., Newman, L., Wakefield, C., Krishnasamy, M., Mann, G. B., Gilham, L., Mason, K., Rauch, P., Cannell, J., Schofield, P. 2017; 3: 72

  Abstract

  Parents with cancer have high rates of psychological morbidity, and their children are at risk of poor psychosocial outcomes, particularly in the context of parental distress and poor family communication. Parents express concerns about the impact of cancer on their children and report a lack of professional guidance in meeting their children's needs. Few parenting interventions exist and current interventions have extensive infrastructure demands making them unsuitable for routine use in most health settings. The aims of this study are to develop and establish the feasibility and acceptability of a novel and accessible psycho-educational intervention to improve parenting efficacy and decrease parental stress among adults with cancer who have children aged 3-12 years. The intervention will be suitable for parents with cancer who are receiving treatment with a view to longer term survival, irrespective of cancer diagnosis, and their respective co-parents.This study comprises two phases using the UK Medical Research Council framework for developing complex interventions. In the development phase, intervention content will be iteratively developed and evaluated in consultation with consumers, and in the piloting phase, feasibility will be tested in a clinical sample of 20 parents with cancer and their co-parents using a single arm, pre-test post-test design. The intervention will comprise an audiovisual resource (DVD), a question prompt list, and a telephone call with a clinical psychologist. Questionnaires administered pre- and 1 month post-intervention will assess parental stress, psychological morbidity, quality of life, self-efficacy and perceptions of child adjustment, and family functioning. Intervention feasibility will be determined by mixed-method participant evaluation of perceived usefulness, benefits, and acceptability.This new initiative will translate existing descriptive evidence into an accessible intervention that supports parenting during cancer treatment and meets the information needs of parents with cancer and their families. This is an important advance: despite increasing recognition of the impact of parental cancer on the family, intervention research lags behind the descriptive literature. This low-intensity, accessible, and targeted intervention places minimal burden on infrastructure and promotes patient autonomy and self-management. If feasible, this style of intervention may be a template for future interventions with similar populations.

  View details for DOI 10.1186/s40814-017-0215-y

  View details for PubMedID 29238608

  View details for PubMedCentralID PMC5725968

• Family Communication, Risk Perception and Cancer Knowledge of Young Adults from BRCA1/2 Families: a Systematic Review. Journal of genetic counseling Young, A. L., Butow, P. N., Vetsch, J., Quinn, V. F., Patenaude, A. F., Tucker, K. M., Wakefield, C. E. 2017; 26 (6): 1179-1196

  Abstract

  Understanding challenges in familial communication of cancer risk has informed genetic service delivery. Parent-child interactions have received considerable attention, but few studies focus on young adulthood experiences within BRCA1/2 families. Young adults are approaching, or at a life stage where awareness of hereditary cancer risk is vital for informed choice of risk management options. This review assesses family communication, risk perception and cancer knowledge held by 18-40 year old individuals who have a parent with a BRCA1/2 gene mutation or carry the gene mutation themselves. Thirteen papers met the inclusion criteria. One utilized a 'mixed methods' methodology and the remaining used a qualitative approach. Findings were synthesized into themes and reported narratively. In general, parents are communicating openly about genetic risk with young adult offspring, but there is evidence that some young adults are withholding information from their parents about their own test results. Risk perception is influenced by a family history of cancer, childbearing plans and health providers' advice. Misconceptions about genetic risk appear to be common and gaps in hereditary cancer knowledge are evident. It is unclear whether incorrect knowledge was passed from parents to offspring. Health providers need to provide developmentally appropriate services for emerging adults (18-25 years old), with particular support in navigating through risk management options.

  View details for DOI 10.1007/s10897-017-0125-4

  View details for PubMedID 28667568

• Models of childhood cancer survivorship care in Australia and New Zealand: Strengths and challenges. Asia-Pacific journal of clinical oncology Signorelli, C., Wakefield, C. E., McLoone, J. K., Fardell, J. E., Lawrence, R. A., Osborn, M., Truscott, J., Tapp, H., Cohn, R. J. 2017; 13 (6): 407-415

  Abstract

  Childhood cancer survivors remain at risk of developing life-altering and/or life-threatening health conditions following the completion of curative treatment. However, no uniform model of care for childhood cancer survivors exists in Australia and New Zealand (ANZ). This study reports on current childhood cancer survivorship care in ANZ, highlighting the challenges childhood cancer survivor long-term follow-up (LTFU) clinics face.We conducted semistructured, telephone interviews with the pediatric medical director and clinical nurse consultant from all 11 LTFU clinics at tertiary referral pediatric oncology units across ANZ (n = 19; 100% response rate). Data were analyzed using NVivo10.Participants unanimously identified limited options for transitioning older survivors out of pediatrics and inadequate funding as central challenges to the provision of best-practice LTFU care. There is duplication of resource development between clinics (e.g. survivorship care plan templates and clinic systems). Although participants recognized an overly prescriptive model of LTFU care as potentially unfeasible, the majority endorsed a national, or even bi-national, model of care that could be tailored to meet the needs of their local environment.The lack of an accepted model of optimal childhood cancer survivorship care across ANZ prevents the synergistic development of survivorship guidelines, survivorship care plans, transition pathways, information technology solutions, funding streams and late effects data consortiums. Sufficient resources to facilitate growth may be difficult to secure if approached by individual centers rather than via a national, cooperative effort. Improved solutions are urgently needed for transitioning survivors to appropriate care beyond the pediatric age.

  View details for DOI 10.1111/ajco.12700

  View details for PubMedID 28670761

• Quantifying family dissemination and identifying barriers to communication of risk information in Australian BRCA families. Genetics in medicine : official journal of the American College of Medical Genetics Healey, E., Taylor, N., Greening, S., Wakefield, C. E., Warwick, L., Williams, R., Tucker, K. 2017; 19 (12): 1323-1331

  Abstract

  PurposeRecommendations for BRCA1 and BRCA2 mutation carriers to disseminate information to at-risk relatives pose significant challenges. This study aimed to quantify family dissemination, to explain the differences between fully informed families (all relatives informed verbally or in writing) and partially informed families (at least one relative uninformed), and to identify dissemination barriers.MethodsBRCA1 and BRCA2 mutation carriers identified from four Australian hospitals (n=671) were invited to participate in the study. Distress was measured at consent using the Kessler psychological distress scale (K10). A structured telephone interview was used to assess the informed status of relatives, geographical location of relatives, and dissemination barriers. Family dissemination was quantified, and fully versus partially informed family differences were examined. Dissemination barriers were thematically coded and counted.ResultsA total of 165 families participated. Information had been disseminated to 81.1% of relatives. At least one relative had not been informed in 52.7% of families, 4.3% were first-degree relatives, 27.0% were second-degree relatives, and 62.0% were cousins. Partially informed families were significantly larger than fully informed families, had fewer relatives living in close proximity, and exhibited higher levels of distress. The most commonly recorded barrier to dissemination was loss of contact.ConclusionLarger, geographically diverse families have greater difficulty disseminating BRCA mutation risk information to all relatives. Understanding these challenges can inform future initiatives for communication, follow-up and support.

  View details for DOI 10.1038/gim.2017.52

  View details for PubMedID 28492536

• Therapeutic Alliance and Group Cohesion in an Online Support Program for Adolescent and Young Adult Cancer Survivors: Lessons from "Recapture Life". Journal of adolescent and young adult oncology McGill, B. C., Sansom-Daly, U. M., Wakefield, C. E., Ellis, S. J., Robertson, E. G., Cohn, R. J. 2017; 6 (4): 568-572

  Abstract

  Psychological support services for adolescent and young adults (AYAs) with cancer are moving online and are increasingly peer based. It is unclear whether online service delivery impacts critical therapeutic elements such as collaborative patient-therapist rapport and group cohesion. AYA cancer survivors (N = 39) participating in a six-week online cognitive-behavioral therapy group program-"Recapture Life"-rated their perception of therapeutic alliance and group cohesion. Participant-rated alliance and group cohesion were high throughout the program, and therapist-rated participant openness, trust, and motivation strengthened over time. The findings provide further support for the expansion of AYA cancer support services to the online domain.

  View details for DOI 10.1089/jayao.2017.0001

  View details for PubMedID 28581346

• Decision Aid for Nutrition Support in Pediatric Oncology: A Pilot Study. JPEN. Journal of parenteral and enteral nutrition Sajeev, M., Cohen, J., Wakefield, C. E., Fardell, J. E., Cohn, R. J. 2017; 41 (8): 1336-1347

  Abstract

  Despite the importance of nutrition support in preventing malnutrition in pediatric oncology, the decision to initiate and choose which nutrition support method is most appropriate can be difficult for parents and healthcare professionals. Decision aids are decision-focused patient information materials. They can improve knowledge, reduce decisional conflict, improve patients' risk perception, and increase patient participation in the decision-making process. They have never been evaluated for pediatric oncology nutrition decisions. We aimed to develop and pilot test a decision aid to assist parents making these decisions in collaboration with their healthcare team.The decision aid was developed in accordance with the International Patient Decision Aid Standards guidelines and evaluated in a single-center pilot study. The parents and healthcare professionals of pediatric oncology patients were eligible. Participants read the decision aid and completed a questionnaire assessing acceptability, usability, and improvement in understanding.Thirty-one parents and 15 healthcare professionals participated. Parents found the decision aid balanced, relevant, and satisfactory overall. Some parents reported the decision aid was too long (26%). Healthcare professionals positively rated the development process, usefulness to parents, and content and format of the decision aid. Forty-three percent reported that using the decision aid would save them time. There were no significant associations between health literacy, decisional satisfaction, decisional regret, acceptability, and improvement in understanding.The decision aid appears acceptable and usable for our target population. Decision aid feedback provided critical data to make modifications before evaluating the decision aid in a randomized controlled trial.

  View details for DOI 10.1177/0148607116661840

  View details for PubMedID 27503938

• Distance-delivered physical activity interventions for childhood cancer survivors: A systematic review and meta-analysis. Critical reviews in oncology/hematology Mizrahi, D., Wakefield, C. E., Fardell, J. E., Quinn, V. F., Lim, Q., Clifford, B. K., Simar, D., Ness, K. K., Cohn, R. J. 2017; 118: 27-41

  Abstract

  This review aimed to determine the feasibility of distance-delivered physical activity (PA) interventions in childhood cancer survivors (CCS), and assess the effect on PA levels, and physical, physiological and psychological outcomes. We searched electronic databases until May 2016, including studies following intensive treatment. Meta-analyses were conducted on randomized controlled trials. We calculated the effect of interventions on PA levels and physical, physiological and psychological health outcomes. Thirteen studies (n=270 participants) were included in the systematic review and four (n=102 participants) in the meta-analysis. Most studies used telephone to deliver interventions with contact (1/day-1/month), duration (2 weeks-1year) and timing (maintenance therapy->20years following intensive treatment) varying between interventions. Interventions yielded a mean recruitment rate=64%, retention rate=85% and adherence rate=88%. Interventions did not increase PA levels (p=0.092), but had a positive effect on physical function (p=0.008) and psychological outcomes (p=0.006). Distance-delivered PA interventions are feasible in CCS. Despite not increasing PA levels, participation may improve physical and psychological health; however, larger randomized controlled trials are warranted.

  View details for DOI 10.1016/j.critrevonc.2017.08.008

  View details for PubMedID 28917267

• Importance of updating family cancer history in childhood cancer survivors. Familial cancer Russo, S., Warby, M., Tucker, K. M., Wakefield, C. E., Cohn, R. J. 2017; 16 (4): 605-610

  Abstract

  Estimates of the number of childhood cancers with a genetic basis range from 5-8.5% found in germline samples to 29% based on clinical criteria. Family history-taking practice is a fundamental first step in detecting at risk individuals and families. This study focused on Li-Fraumeni Syndrome (LFS), a highly penetrant cancer syndrome. Reported family history in a cohort of 648 of cancer survivor cohort (CCS) was examined. Eligible CCS were: (i) aged up to 14 years at diagnosis; (ii) more than 5 years postdiagnosis; (iii) treated for a childhood cancer at the study hospitals in NSW, Australia; (iv) in remission for more than 3 years. CCS completed self-administered questionnaires. Medical records confirmed diagnosis and treatment-related information. Our findings reveal an increased cancer risk among sibling and relatives of CCS. 91% of siblings diagnosed with cancer were diagnosed under the age of 40 and about 30% diagnosed under the aged of 15 revealing a 5- (RR = 5.1; 95% CI, 3.3-7.9) and 44-fold (RR = 44.6; 95% CI, 18.4-108.3) increased risked of cancer compared with the Australian population, respectively. About 2% of CCS reported that they had been diagnosed with a genetic cancer syndrome. However, 11% of survivors described a family history pattern which met Chompret criteria for screening for TP53 mutations associated with LFS. Our data suggests that familial cancer predispositions may be initially overlooked. Aperiodic and accurate ascertainment of family cancer history of childhood cancer patients and survivors is therefore recommended.

  View details for DOI 10.1007/s10689-017-9988-7

  View details for PubMedID 28405782

• Something's got to give: time-cost trade-offs in site-specific research approval can negatively impact patient recruitment in multi-institutional studies. Internal medicine journal Sansom-Daly, U. M., Evans, H. E., Ellis, S. J., McGill, B. C., Hetherington, K., Wakefield, C. E. 2017; 47 (9): 1088-1089

  View details for DOI 10.1111/imj.13535

  View details for PubMedID 28891181

• The impact of long-term follow-up care for childhood cancer survivors: A systematic review. Critical reviews in oncology/hematology Signorelli, C., Wakefield, C. E., Fardell, J. E., Wallace, W. H., Robertson, E. G., McLoone, J. K., Cohn, R. J. 2017; 114: 131-138

  Abstract

  Childhood cancer survivors are at risk of developing late treatment-related complications. In response, many hospitals worldwide have established follow-up clinics to monitor survivors as they age. However, there is limited evidence of the efficacy of these clinics in meeting the lifelong healthcare needs of survivors. In this review we collated evidence of the measurable impact of engagement in specialized survivorship care, on survivors' medical and psychosocial outcomes.We conducted a systematic review according to PRISMA guidelines, and assessed the quality of included studies using 'QualSyst'.We screened 641 abstracts in Medline, Embase and CINAHL, yielding 9 eligible articles (N=5135 survivors).Articles were eligible if: participants were diagnosed with cancer prior to the age of 21; participants were classified as 'survivors' of childhood or adolescent cancer, usually defined as 5 years from diagnosis or 2 years from the end of treatment; studies evaluated the impact of engagement in long term follow-up (LTFU) care on medical, psychosocial or other outcomes in pediatric cancer survivors.One article evaluated primary care physician-led follow-up and the remainder evaluated specialized survivorship clinics. Survivors attending follow-up care tended to demonstrate higher knowledge about their treatment and diagnosis (n=2), and had more accurate late effects risk perception (n=3). Attendees also engaged in increased more regular surveillance, had fewer emergency department visits/hospitalizations (n=1), and more late effects detected (n=3), than non-attendees.There is a dearth of literature systematically evaluating the medical and psychosocial impact of follow-up care. Research suggests however, survivors engaged in follow-up care have better health and educational outcomes, highlighting the need for lifelong survivorship care and ongoing late effects education for survivors. Recalling survivors who become disengaged with follow-up care is also valuable, as their risk of treatment-related complications rises with age. Further systematic evaluation is urgently needed.

  View details for DOI 10.1016/j.critrevonc.2017.04.007

  View details for PubMedID 28477741

• Establishing Australian school re-entry service guidelines for children diagnosed with cancer. Journal of paediatrics and child health Lum, A., Donnan, B., Wakefield, C. E., Fardell, J. E., Marshall, G. M. 2017; 53 (6): 529-533

  View details for DOI 10.1111/jpc.13563

  View details for PubMedID 28497503

• Changes in body mass index in long-term survivors of childhood acute lymphoblastic leukemia treated without cranial radiation and with reduced glucocorticoid therapy. Pediatric blood & cancer Touyz, L. M., Cohen, J., Neville, K. A., Wakefield, C. E., Garnett, S. P., Mallitt, K. A., Grech, A. M., Cohn, R. J. 2017; 64 (4)

  Abstract

  Cranial radiation and glucocorticoids are associated with an increase in body mass index (BMI) z-score in survivors of childhood acute lymphoblastic leukemia (ALL). We aimed to investigate the impact of a contemporary treatment protocol that omitted prophylactic cranial radiation and glucocorticoids from the maintenance phase on longitudinal BMI, height, and weight z-scores in children with ALL.We retrospectively studied 184 children with standard- and medium-risk ALL treated without cranial radiation or glucocorticoids. Height, weight, and BMI z-scores were collected from diagnosis to 7 years after diagnosis. Longitudinal changes in anthropometric data were compared to diagnosis using separate linear mixed models, adjusting for age, sex, and socioeconomic status (SES).Relative to diagnosis, there was a significant increase in estimated marginal mean BMI z-score during dexamethasone-containing re-induction (1.08, P < 0.001) that persisted throughout intensification (0.85, P < 0.001) and maintenance phases (0.81, P < 0.001), and up to 7 years after diagnosis (0.76, P = 0.002). Height z-scores decreased over the same time (P < 0.001), whereas weight z-scores fluctuated during treatment and declined thereafter (P = 0.007). A higher BMI z-score at diagnosis was associated with a younger age (P < 0.001), male sex (P < 0.001), and lower SES (P < 0.001).Children who did not receive cranial radiation or glucocorticoids during maintenance remain at increased risk of treatment-related increases in BMI z-score, which is associated with a loss of height z-score. Interventions designed to mediate this risk should begin early, even while children are on treatment because of the association with cardiovascular risk. Monitoring of survivors of ALL should include anthropometric measures.

  View details for DOI 10.1002/pbc.26344

  View details for PubMedID 27862918

• Health Literacy in Adolescents and Young Adults: Perspectives from Australian Cancer Survivors. Journal of adolescent and young adult oncology Lin, M., Sansom-Daly, U. M., Wakefield, C. E., McGill, B. C., Cohn, R. J. 2017; 6 (1): 150-158

  Abstract

  Health literacy is a critical determinant of health and an emerging public health concern. Little is known about the health literacy of adolescents and young adults (AYAs) or about the ability of young patients to communicate health needs and critically evaluate information. We used qualitative methods to investigate the three aspects of health literacy (functional, communicative, and critical) in Australian AYA cancer survivors.Forty Australian AYA cancer survivors, aged 15-29 either at diagnosis or recruitment, participated in semistructured interviews. Participants were asked about sources of information and ability to understand information, communicate questions, and critically evaluate the validity, reliability, and relevancy of information to their situation. Self-reported adherence levels and advice for AYA-specific care was also obtained. Interviews were coded and analyzed for emergent themes using QSR NVivo 10.Almost all AYAs named their doctor as the primary source of information. Most AYAs reported no difficulties with understanding, communicating, or assessing relevancy of information. Conversely, few AYAs reported confidence in assessment of validity and reliability of information. The doctor-patient relationship appeared to be an influential factor in all aspects of health literacy.AYAs frequently reported having a good understanding and communication around health information; however, few AYAs described engaging in critical evaluations of this information. The potential impact of the doctor-patient relationship across several domains of health literacy suggests that more focus could be placed on promoting health literacy at physician, community, and societal levels, in addition to promoting individual skills.

  View details for DOI 10.1089/jayao.2016.0024

  View details for PubMedID 27656761

• Participation in psychosocial oncology and quality-of-life research: a systematic review. The Lancet. Oncology Wakefield, C. E., Fardell, J. E., Doolan, E. L., Aaronson, N. K., Jacobsen, P. B., Cohn, R. J., King, M. 2017; 18 (3): e153-e165

  Abstract

  Quality-of-life and psychosocial oncology studies that have low participation might have less precision, less statistical power, and can have non-response bias. In this systematic Review, we searched MEDLINE, Embase, and PsycInfo, for paediatric studies published in 2010-15 and adults studies published 2014-15. Studies were eligible if they were original studies published in a peer-reviewed journal; recruited children (aged 0-18 years at diagnosis) with cancer or their parents, or adult patients with cancer; and assessed psychosocial outcomes, including quality of life, depression, anxiety, wellbeing, distress, coping, or adjustment as a primary or secondary outcome. We assessed participation reporting quality, calculated percentages of participation achieved, and measured the influence of study design and participant characteristics. We reviewed 311 studies including a total of 87 240 adults, children, and parents. Mean participation across studies was more than 70% (paediatric participation was 72% and adult participation was 74%). Many studies did not report data essential for the assessment of participation, especially for non-respondents. Studies using a longitudinal cohort design had higher participation than randomised trials. In paediatric studies, recruitment of participants at diagnosis, face to face, and with the use of short questionnaires yielded higher participation. Other study design characteristics (method of data collection, who enrolled the participants, and incentives) and patient characteristics (cancer type, patient or parent age, and sex) did not affect participation in either paediatric or adult studies. Researchers can use these data to improve reporting quality and make evidence-based choices to maximise participation in future studies.

  View details for DOI 10.1016/S1470-2045(17)30100-6

  View details for PubMedID 28271870

• "Forewarned and forearmed": Long-term childhood cancer survivors' and parents' information needs and implications for survivorship models of care. Patient education and counseling Vetsch, J., Fardell, J. E., Wakefield, C. E., Signorelli, C., Michel, G., McLoone, J. K., Walwyn, T., Tapp, H., Truscott, J., Cohn, R. J. 2017; 100 (2): 355-363

  Abstract

  This mixed-method study assessed 1) survivors' and parents' information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics.Stage 1: CCS and parents of CCS, >5years post-diagnosis completed a questionnaire on information needs, overall health and perceived risk. Predictors for unmet information needs were assessed by multivariable regression. Stage 2: participants were interviewed in-depth on these topics.Questionnaires were completed by 485 participants comprising 322 survivors (mean age: 26.7years, SD=7.9; time since diagnosis: 19.7years, SD=8.8) and 163 parents (child age: 12.9years, SD=2.4; time since diagnosis: 9.7years, SD=2.3), and complemented by 70 interviews. Survivors reported unmet information needs about late effects (57.5%) and parents for fertility issues (62.5%). Survivors had more unmet needs for medical information whereas parents had significantly more regarding sexual issues and lifestyle. Being a parent (p=0.001), dissatisfaction with follow-up care (p=0.003), lower overall health (p=0.014), higher perceived risk of late effects (p<0.001), and greater anxiety/depression (p<0.001) were significantly associated with more unmet needs.Unmet information needs were common for survivors and parents of CCS.Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs.

  View details for DOI 10.1016/j.pec.2016.09.013

  View details for PubMedID 27693083

• Primary Care Physicians' Perspectives of Their Role in Cancer Care: A Systematic Review. Journal of general internal medicine Lawrence, R. A., McLoone, J. K., Wakefield, C. E., Cohn, R. J. 2016; 31 (10): 1222-36

  Abstract

  As survival rates improve, cancer is increasingly considered a chronic illness associated with significant long-term burden and sequelae, both physical and psychological. Various models of cancer care, including primary care physician (PCP)-led and shared-care, have been proposed, though a systematic review of PCPs' perspectives of their role and challenges in providing cancer care remains lacking. This systematic review summarises available literature on PCPs' perspectives of their role in cancer care.Five databases (MEDLINE, MEDLINE In-Process, EMBASE, PsycINFO and CINAHL) were systematically searched using keywords and MeSH headings for articles from 1993-2015 exploring PCPs' views of their role in the care of patients/survivors of both child and adult cancers. Two independent reviewers screened abstracts for full-text review, abstracted data and performed a quality assessment.Thirty-five articles representing the perspectives of 10,941 PCPs were captured. PCPs' confidence to provide care varied according to cancer phase (e.g. treatment versus survivorship), care domain (e.g. acute medical care versus psychological late effects), and disease prevalence (e.g. breast malignancies versus childhood cancers), with preferences for shared- versus independent-care models varying accordingly. Barriers included a lack of timely and specific information/communication from oncologists and limited knowledge/lack of guidelines, as well as lack of time, remuneration and patient trust.The data was limited by a lack of consideration of the preferences of patients and oncologists, leading to uncertainty about the acceptability and feasibility of suggested changes to cancer care.PCPs appear willing to provide cancer care for patients/survivors; however, they report barriers and unmet needs related to providing such care. Future research/interventions should take into account the preferences and needs of PCPs.

  View details for DOI 10.1007/s11606-016-3746-7

  View details for PubMedID 27220499

  View details for PubMedCentralID PMC5023605

• Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay. Cancer Georgiou, G., Wakefield, C. E., McGill, B. C., Fardell, J. E., Signorelli, C., Hanlon, L., Tucker, K., Patenaude, A. F., Cohn, R. J. 2016; 122 (18): 2876-85

  Abstract

  Genetic testing to determine cancer survivors' risk of developing late effects from their cancer treatment will be increasingly used in survivorship care. This 2-stage study with 64 survivors of childhood cancer and their parents investigated the preferences and acceptability of testing among those who may be at risk of developing late effects.The first stage (Stage 1) identified the most commonly perceived benefits and concerns regarding genetic testing for the risk of late effects among 24 participants. In Stage 2, during interviews, 20 survivors (55% of whom were female; mean age, 26.0 years [range, 18-39 years]; standard deviation [SD], 0.80) and 20 parents (55% of whom were male; mean age of child survivor, 14.2 years [range, 10-19 years]; SD, 0.79) rated the 7 most common benefits and concerns from those identified in Stage 1. Interviews were transcribed verbatim and analyzed. Decisional balance ratios were calculated by dividing the participants' average concerns scores with the average benefits scores.Genetic testing for late effects was highly acceptable: 95% of participants leaned toward testing, and the majority (65.9%) would pay up to Australian $5000. The majority (97.2%) reported it was acceptable to wait for up to 6 months to receive results, and to be offered testing immediately after treatment or when the survivor reached adulthood (62.9%). Survivors and parents had a highly positive decisional balance (Mean (M), 0.5 [SD, 0.38] and M, 0.5 [SD, 0.39], respectively), indicating that perceived benefits outweighed concerns.Although to our knowledge clinical efficacy has yet to be clearly demonstrated, survivors and parents described positive interest in genetic testing for the risk of developing late effects. Perceived benefits outweighed harms, and the majority of participants would be willing to pay, and wait, for testing. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2876-2885. © 2016 American Cancer Society.

  View details for DOI 10.1002/cncr.30119

  View details for PubMedID 27258553

• Sexual and Romantic Relationships: Experiences of Adolescent and Young Adult Cancer Survivors. Journal of adolescent and young adult oncology Robertson, E. G., Sansom-Daly, U. M., Wakefield, C. E., Ellis, S. J., McGill, B. C., Doolan, E. L., Cohn, R. J. 2016; 5 (3): 286-91

  Abstract

  This study examined the quality and satisfaction of sexual/romantic relationships of adolescents/young adults (AYAs) who recently completed cancer treatment. AYAs between 16 and 26 years old (62.5% female) and less than 24 months post-treatment were interviewed using the Psychosocial Adjustment to Illness Scale (PAIS) interview. Of 43 participants, 16 (37.2%) were in a relationship at time of the interview; eight (50%) reported minor relationship/sexual difficulties. AYAs identified emotional support with their partner as positive aspects of their relationships, and described relational conflict associated with communication difficulties and loss of sexual interest. Better understanding the factors that enable healthy relationships warrants further exploration.

  View details for DOI 10.1089/jayao.2015.0061

  View details for PubMedID 26885746

• A Study Protocol for the Australasian Oncofertility Registry: Monitoring Referral Patterns and the Uptake, Quality, and Complications of Fertility Preservation Strategies in Australia and New Zealand. Journal of adolescent and young adult oncology Anazodo, A. C., Stern, C. J., McLachlan, R. I., Gerstl, B., Agresta, F., Cohn, R. J., Jayasinghe, Y., Wakefield, C. E., Daly, G., Chan, D., Gilbert, L., Kemertzis, M., Orme, L. M., Wand, H., Viney, R., Gillam, L., Deans, R., Jetti, M., Wu, J., Chapman, M., Ledger, W., Sullivan, E. A. 2016; 5 (3): 215-25

  Abstract

  Improvements in cancer diagnosis and treatment in patients of a reproductive age have led to significant improvements in survival rates; however, a patient's fertility can be affected by both cancer and its treatment. As survival rates improve, there is an expectation by clinicians and patients that patient's reproductive potential should be considered and protected as much as possible. However, there is a lack of data about current fertility preservation (FP) uptake as well as accurate data on the acute or permanent reproductive risks of cancer treatment, complications of FP in cancer patients, and the use and success of assisted reproductive technology by cancer survivors. FP remains a major gap in acute cancer management with lifelong implications for cancer survivors. The FUTuRE Fertility research team has established the first binational multisite Australasian Oncofertility Registry, which is collecting a complete oncofertility data set from cancer and fertility centers in Australia and New Zealand. Outcomes from the research study will monitor referral, uptake, and complications of FP, document patient's reproductive potential after treatment, and collect data on the use of assisted reproductive technology following cancer treatment. The data will be linked to other routine health and administrative data sets to allow for other research projects to be carried out. The changes in oncofertility care will be benchmarked against the Australasian Oncofertility Charter. The data will be used to develop evidence-based guidelines and resources, including development of accurate risk projections for patients' risk of infertility, allowing clinicians to make recommendations for FP or assisted reproductive technology. Australian New Zealand Clinical Trials Number-12615000221550.

  View details for DOI 10.1089/jayao.2015.0062

  View details for PubMedID 26981848

• Utilizing the Experience of Consumers in Consultation to Develop the Australasian Oncofertility Consortium Charter. Journal of adolescent and young adult oncology Anazodo, A. C., Gerstl, B., Stern, C. J., McLachlan, R. I., Agresta, F., Jayasinghe, Y., Cohn, R. J., Wakefield, C. E., Chapman, M., Ledger, W., Sullivan, E. A. 2016; 5 (3): 232-9

  Abstract

  In Australia and New Zealand, there has not been a national systematic development of oncofertility services for cancer patients of reproductive age although many cancer and fertility centers have independently developed services. A number of barriers exist to the development of these services, including a lack of clear referral pathways, a lack of communication between clinicians and patients about fertility preservation, differences in the knowledge base of clinicians about the risk of cancer treatment causing infertility and fertility preservation options, a lack of national health insurance funding covering all aspects of fertility preservation, and storage costs and cultural, religious, and ethical barriers. The development of strategies to overcome these barriers is a high priority for oncofertility care to ensure that equitable access to the best standard of care is available for all patients.The FUTuRE Fertility Research Group led a collaborative consultation process with the Australasian Oncofertility Consumer group and oncofertility specialists to explore consumers' experiences of oncofertility care. Consumers participated in qualitative focus group meetings to define and develop a model of consumer driven or informed "gold standard oncofertility care" with the aim of putting together a Charter that specifically described this.The finalized Australasian Oncofertility Consortium Charter documents eight key elements of gold standard oncofertility care that will be used to monitor the implementation of oncofertility services nationally, to ensure that these key elements are incorporated into standard practice over time.

  View details for DOI 10.1089/jayao.2015.0056

  View details for PubMedID 26981709

• Development and Evaluation of an Information Booklet for Grandparents of Children With Cancer. Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses Wakefield, C., Lin, S., Drew, D., McLoone, J., Doolan, E., Young, A., Fardell, J., Cohn, R. 2016; 33 (5): 361-9

  Abstract

  The needs of grandparents of children with cancer are often overlooked. This study evaluated a new educational resource (booklet) targeted toward grandparents of children with cancer. A multidisciplinary committee developed a printed booklet targeting grandparents' information needs identified in a previous study. Seventy-nine grandparents of children with cancer (63% grandmothers, Mage = 66.04, SD = 7.0 years) read and evaluated the booklet. Quantitative responses were analyzed with SPSS, and qualitative responses were thematically coded using QSR NVivo 10. Grandparents' responses to the resource were positive, with 92% finding the booklet "informative" (n = 73), "useful" (84%, n = 66), and "very relevant" (50%, n = 39). Qualitative responses reflected an appreciation for the booklet's readability, informative content, and quotes from grandparent experiences. The developed booklet was highly acceptable to grandparents of children with cancer and addressed their need for reassurance and guidance on obtaining further support. This study demonstrates the feasibility of developing and evaluating a targeted resource to meet grandparent's identified information needs.

  View details for DOI 10.1177/1043454215602689

  View details for PubMedID 26510642

• The Reality of Relapse: Impact of Cancer Relapse on Survivorship Interventions and Patient-Reported Outcomes Data. Pediatric blood & cancer Sansom-Daly, U. M., McGill, B. C., Anazodo, A. C., Plaster, M., Maguire, F., O'Dwyer, C., Ellis, S. J., Robertson, E. G., Cohn, R. J., Wakefield, C. E. 2016; 63 (8): 1492-3

  View details for DOI 10.1002/pbc.26001

  View details for PubMedID 27138629

• Rumination and self-defining memories in the context of health concerns. Memory (Hove, England) Sansom-Daly, U. M., Bryant, R. A., Cohn, R. J., Wakefield, C. E. 2016; 24 (7): 939-48

  Abstract

  Individuals with health anxiety report experiencing a strong sense of vulnerability to illness. Such beliefs may be driven by the biased recollection of past illness-related events. However, little research has explored the role of memory in health anxiety. In other disorders, rumination has also been identified as a process that leads individuals to recall memories dominated by the content of their concerns. This study examined the proposition that rumination might impact the content of "self-defining" autobiographical memories among 60 college students with varying health anxiety (35% with clinical-level health anxiety). Participants were randomised to experiential/ruminative self-focus conditions, and then they completed the Self-Defining Memory Task. Responses were coded for valence and illness-relatedness. Results indicated that rumination led participants to retrieve more illness-related self-defining memories, while higher health anxiety scores were associated with more negative, but not more illness-focused memories. Ruminative thinking appears to activate health concerns, and may play a role in maintaining ongoing health anxiety.

  View details for DOI 10.1080/09658211.2015.1059860

  View details for PubMedID 26273962

• The psychological impact of genetic information on children: a systematic review. Genetics in medicine : official journal of the American College of Medical Genetics Wakefield, C. E., Hanlon, L. V., Tucker, K. M., Patenaude, A. F., Signorelli, C., McLoone, J. K., Cohn, R. J. 2016; 18 (8): 755-62

  Abstract

  This review assessed the psychological impact that acquiring personal and familial genetic information has on children. We also examined the concordance between the available empirical data and clinical guidance/perspectives articles.We screened 591 abstracts and identified 13 studies, representing 966 children. Ten studies assessed 386 children tested for familial adenomatous polyposis (n = 171), hereditary cardiac disease (n = 134), and other conditions (n = 81). Three studies addressed the impact of BRCA1/2 testing of a family member on 580 children.Serious adverse psychological outcomes were uncommon. Most studies reported no significant increase in mean anxiety, depression, and distress scores (n = 8, 61.5%); however, some children experienced intrafamilial distress, discrimination, and guilt/regret. Some children were more concerned about their own health or their family members' health. There was limited consistency between anticipated adverse impact and empirical data.The review identified little conclusive evidence of deleterious psychological consequences for children acquiring genetic information. However, there is a lack of data regarding genetic testing for conditions that may not be treatable/modifiable, as well as a dearth of longitudinal studies. Therefore, clinical caution remains essential for the ethical integration of genetic testing into pediatrics. Further research assessing the potential positive and negative effects of genetic testing in childhood is warranted.Genet Med 18 8, 755-762.

  View details for DOI 10.1038/gim.2015.181

  View details for PubMedID 26741411

• Feasibility of clinical psychosocial screening in pediatric oncology: Implementing the PAT2.0. Journal of psychosocial oncology McCarthy, M. C., Wakefield, C. E., DeGraves, S., Bowden, M., Eyles, D., Williams, L. K. 2016; 34 (5): 363-75

  Abstract

  This study examined the feasibility of implementing the Psychosocial Assessment Tool (PAT2.0) from the perspectives of families and health-care providers (HCPs). PAT2.0 data were collected from 104 families. Individual and focus group interviews were conducted with HCPs. Parents reported that the PAT2.0 was brief and easy to complete. HCPs' perspectives on the utility of the PAT2.0 were mixed and varied according to clinical roles. A major perceived benefit was the PAT2.0 as a communication tool. Barriers included timing and an increased workload for social workers. Psychosocial screening represents a significant practice change for oncology HCPs and is an important area of ongoing research.

  View details for DOI 10.1080/07347332.2016.1210273

  View details for PubMedID 27398828

• Fertility concerns among child and adolescent cancer survivors and their parents: A qualitative analysis. Journal of psychosocial oncology Ellis, S. J., Wakefield, C. E., McLoone, J. K., Robertson, E. G., Cohn, R. J. 2016; 34 (5): 347-62

  Abstract

  Cancer diagnoses and treatment may have long-term effects on fertility. Semistructured interviews were administered to young cancer survivors (<20 years) and their parents (n = 97). Fertility related concerns were reported by 45 participants (46.4%). Themes included: distress regarding potential infertility; the effect of infertility on future relationships, self-esteem, and miscommunications/confusion about fertility status; access to fertility testing; and preservation options. Parents also reported challenges regarding how and when it was developmentally appropriate to talk to their children about fertility. The development of comprehensive consumer-driven approaches to managing the fertility concerns of young survivors and their families is essential.

  View details for DOI 10.1080/07347332.2016.1196806

  View details for PubMedID 27269305

• Acceptability and feasibility of an e-mental health intervention for parents of childhood cancer survivors: "Cascade". Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Wakefield, C. E., Sansom-Daly, U. M., McGill, B. C., Ellis, S. J., Doolan, E. L., Robertson, E. G., Mathur, S., Cohn, R. J. 2016; 24 (6): 2685-94

  Abstract

  The aim of this study was to evaluate the feasibility and acceptability of "Cascade": an online, group-based, cognitive behavioral therapy intervention, delivered "live" by a psychologist, to assist parents of children who have completed cancer treatment.Forty-seven parents were randomized to Cascade (n = 25) or a 6-month waitlist (n = 22). Parents completed questionnaires at baseline, 1-2 weeks and 6 months post-intervention. Thirty parents completed full evaluations of the Cascade program (n = 21 randomized to Cascade, n = 9 completed Cascade post-waitlist).Ninety-six percent of Cascade participants completed the intervention (n = 24/25). Eighty percent of parents completed every questionnaire (mean completion time 25 min (SD = 12)). Cascade was described as at least "somewhat" helpful by all parents. None rated Cascade as "very/quite" burdensome. Parents reported that the "online format was easy to use" (n = 28, 93.3 %), "I learnt new skills" (n = 28, 93.3 %), and "I enjoyed talking to others" (n = 29, 96.7 %). Peer-to-peer benefits were highlighted by good group cohesion scores.Cascade is highly acceptable and feasible. Its online delivery mechanism may address inequities in post-treatment support for parents, a particularly acute concern for rural/remote families. Future research needs to establish the efficacy of the intervention.ACTRN12613000270718, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12613000270718.

  View details for DOI 10.1007/s00520-016-3077-6

  View details for PubMedID 26781620

• Health Literacy in Adolescents and Young Adults: An Updated Review. Journal of adolescent and young adult oncology Sansom-Daly, U. M., Lin, M., Robertson, E. G., Wakefield, C. E., McGill, B. C., Girgis, A., Cohn, R. J. 2016; 5 (2): 106-18

  Abstract

  Health literacy is important for health outcomes in adults. However, little is known about the health literacy of adolescents and young adults (AYAs). The purpose of this study was to provide an updated systematic review examining health literacy among AYAs with and without chronic illness. Specifically, the review considered (1) what sources of health information AYAs use; (2) how well AYAs are able to understand, communicate, and critically evaluate health-related information; and (3) whether health literacy is associated with health behaviors and outcomes.A systematic search was conducted for literature published in peer-reviewed journals using Medline, Embase, and PsycINFO databases.Of 603 articles reviewed, 14 studies met the inclusion criteria, six of which examined health literacy in a chronic illness population. Studies reported high usage for information sources, though no clear links between source type and health literacy emerged. Adequate health literacy was reported in at least 60% of participants, though poor functional literacy was reported. Few studies explored communicative or critical health literacy; those that did indicated that AYAs experience challenges in these domains. Poorer health literacy was associated with some adverse health outcomes, such as obesity and smoking. For AYAs with a chronic illness, there were mixed findings between health literacy and medication adherence.Understanding the challenges AYAs face with regards to complex developing communicative and critical health literacy skills is crucial. Due to the paucity of research in this field, addressing health literacy across all AYAs will provide a valuable step in guiding research in AYAs with cancer.

  View details for DOI 10.1089/jayao.2015.0059

  View details for PubMedID 26859721

• Consensus Among International Ethical Guidelines for the Provision of Videoconferencing-Based Mental Health Treatments. JMIR mental health Sansom-Daly, U. M., Wakefield, C. E., McGill, B. C., Wilson, H. L., Patterson, P. 2016; 3 (2): e17

  Abstract

  Online technologies may reduce barriers to evidence-based mental health care, yet they also create numerous ethical challenges. Recently, numerous professional organizations and expert groups have produced best-practice guidelines to assist mental health professionals in delivering online interventions in an ethically and clinically sound manner. However, there has been little critical examination of these international best-practice guidelines regarding appropriate electronic mental health (e-mental health) service delivery via technologies such as videoconferencing (including Skype), particularly for specific, vulnerable populations. Further, the extent to which concordance exists between these guidelines remains unclear. Synthesizing this literature to provide clear guidance to both mental health professionals and researchers is critical to ensure continued progress in the field of e-mental health.This study aims to review all currently available ethical and best-practice guidelines relating to videoconferencing-delivered mental health treatments in order to ascertain the recommendations for which international consensus could be found. Additionally, this review examines the extent to which each set of guidance addresses several key special populations, including children and young people, and populations living with illness.This systematic review examined guidelines using a two-armed search strategy, examining (1) professional organizations' published guidance; and (2) MEDLINE, PsycINFO, and EMBASE for the past ten years. In order to determine consensus for best-practice, a recommendation was considered "firm" if 50% or more of the reviewed guidelines endorsed it and "tentative" if recommended by fewer guidelines than these. The professional guidelines were also scored by two raters using the Appraisal of Guidelines for Research and Evaluation II (AGREE-II) criteria.In the study, 19 guidelines were included, yielding 11 specific "firm" and a further 123 "tentative-level" recommendations regarding the appropriateness of e-mental health, competence, legal and regulatory issues, confidentiality, consent, professional boundaries, and crisis management. International consensus yielded firm guidance across almost all areas except professional boundaries and some aspects of determining the appropriateness of e-mental health. Few guidelines specifically addressed special populations. Overall guideline quality varied; however, 42% (8/19) of the guidelines scored at least 5 out of 7.This synthesis of guidelines provides a foundation for clinicians and researchers utilizing e-mental health worldwide. The lack of specific guidance relating to special populations is an area warranting further attention in order to strengthen mental health professionals' and researchers' capacity to ethically and effectively tailor e-mental health interventions to these groups.

  View details for DOI 10.2196/mental.5481

  View details for PubMedID 27192931

  View details for PubMedCentralID PMC4889868

• Cancer survivorship services for indigenous peoples: where we stand, where to improve? A systematic review. Journal of cancer survivorship : research and practice Cavanagh, B. M., Wakefield, C. E., McLoone, J. K., Garvey, G., Cohn, R. J. 2016; 10 (2): 330-41

  Abstract

  There are few support programs with evidence-based practices which address the needs of cancer survivors from indigenous populations. This systematic review analysed the experiences and current support services for cancer survivors from indigenous populations following the cessation of cancer treatment.The data sourced for this article was identified from a systematic search of five databases (MEDLINE, MEDLINE In-Process, PyscINFO, CINAHL, and EMBASE). Studies were selected if they described the experiences of indigenous cancer survivors, their families, and/or clinicians primarily responsible for their care. In total 208 unique abstracts were screened, from which 17 studies were identified as having fulfilled all selection criteria.Of the 17 articles reviewed, 12 described qualitative data and 5 provided quantitative data. Common themes identified included the importance of family support throughout the survivorship period, the negative effect of community stigmatization, fatalistic attitudes towards cancer, and the importance of spirituality in coping with, and understanding, the cancer experience. Potential barriers to accessing care included distance and difficulties revisiting the survivor's cancer experience due to an associated fear of cancer recurrence.Indigenous cancer survivors would benefit from survivorship programs more specifically tailored to their individual circumstances, such as personalized spiritual care, facilitation of increased involvement of family members, and connection to other indigenous cancer survivors.The results from this review indicate that there is a need for survivorship care to be shaped specifically for the needs of indigenous cancer survivors.

  View details for DOI 10.1007/s11764-015-0479-2

  View details for PubMedID 26346127

• Sleep Disturbances in Childhood Cancer Survivors. Pediatric blood & cancer Russo, S., Fardell, J. E., Signorelli, C., Wakefield, C. E., Mcloone, J. K., Cohn, R. J. 2016; 63 (4): 759-60

  View details for DOI 10.1002/pbc.25858

  View details for PubMedID 26814443

• Assessment of Fundamental Movement Skills in Childhood Cancer Patients. Pediatric blood & cancer Naumann, F. L., Hunt, M., Ali, D., Wakefield, C. E., Moultrie, K., Cohn, R. J. 2015; 62 (12): 2211-5

  Abstract

  The improved treatment protocols and subsequent improved survival rates among childhood cancer patients have shifted the focus toward the long-term consequences arising from cancer treatment. Children who have completed cancer treatment are at a greater risk of delayed development, diminished functioning, disability, compromised fundamental movement skill (FMS) attainment, and long-term chronic health conditions. The aim of the study was to compare FMS of childhood cancer patients with an aged matched healthy reference group.Pediatric cancer patients aged 5-8 years (n = 26; median age 6.91 years), who completed cancer treatment (<5 years) at the Sydney Children's Hospital, were assessed performing seven key FMS: sprint, side gallop, vertical jump, catch, over-arm throw, kick, and leap. Results were compared to the reference group (n = 430; 6.56 years).Childhood cancer patients scored significantly lower on three out of seven FMS tests when compared to the reference group. These results equated to a significantly lower overall score for FMS.This study highlighted the significant deficits in FMS within pediatric patients having completed cancer treatment. In order to reduce the occurrence of significant FMS deficits in this population, FMS interventions may be warranted to assist in recovery from childhood cancer, prevent late effects, and improve the quality of life in survivors of childhood cancer.

  View details for DOI 10.1002/pbc.25676

  View details for PubMedID 26228925

• Physical activity and screen-time of childhood haematopoietic stem cell transplant survivors. Acta paediatrica (Oslo, Norway : 1992) Bogg, T. F., Shaw, P. J., Cohn, R. J., Wakefield, C. E., Hardy, L. L., Broderick, C., Naumann, F. 2015; 104 (10): e455-9

  Abstract

  Reduced bone mineral density, impaired cardiovascular fitness and increased risk of obesity are well-known late effects of haematopoietic stem cell transplantation (HSCT) in survivors of childhood cancer. These comorbidities can be mitigated through physical activity and limiting screen-time (ST). This study aims to increase the understanding of physical activity and ST behaviours for children following HSCT.Children were recruited from two oncology follow-up clinics and completed a questionnaire on their physical activity levels and screen-time. Children were classified as short (≤2 years) and long-term (>2 years) survivors.Fifty-eight children were eligible, of whom forty children of age 6-18 years (60% males) participated in the study. Less than half (47.5%) met the daily recommendations for physical activity and one-third met the ST recommendations. Late survivors reported higher daily physical activity and less ST than early survivors. Among late survivors, females reported higher daily physical activity and less ST than males.Our findings suggest that the majority of children following HSCT were not sufficiently active and had excessive screen-time; however, this was comparable to healthy populations. Appropriately designed physical activity and screen-time intervention programmes should be explored early following transplant for children undergoing HSCT.

  View details for DOI 10.1111/apa.13120

  View details for PubMedID 26174593

• A study protocol for Truce: a pragmatic controlled trial of a seven-week acceptance and commitment therapy program for young people who have a parent with cancer. BMC psychology Patterson, P., McDonald, F. E., Ciarrochi, J., Hayes, L., Tracey, D., Wakefield, C. E., White, K. 2015; 3 (1): 31

  Abstract

  This paper presents the rationale and study protocol for a pragmatic controlled effectiveness trial of Truce, a prevention-based selective intervention targeting the significant mental health needs of young people who have a parent with cancer.Truce is a seven week, facilitated, face-to-face group program. The design is a 2 groups (intervention vs control) x 3 (pre-treatment vs post-treatment vs 2 month follow-up) repeated measures. Allocation to groups will be dependent upon recruitment; when groups have sufficient numbers, they will be assigned to the intervention condition, but participants recruited without a viable group will be assigned to the wait-list control condition. Eligible participants are young people aged 14 to 22 years who have a parent diagnosed with cancer within the last 5 years. Wait-list controls are offered the opportunity to participate in the program once they have completed their follow-up questionnaires. The target sample size is 65 participants in each condition. The primary hypothesis is that participants in the intervention will show significant reductions in distress and increases in psychological well-being relative to participants in the wait-list control group, and these effects will continue through two-month follow-up. Mixed-models analysis of variance will be used to measure differences between the two conditions. Secondary analyses will focus on variables which may relate to the effectiveness of the intervention: ACT-related concepts of experiential avoidance and mindfulness, family functioning, unmet needs and demographic variables. We will also assess program fidelity and satisfaction.The development and evaluation of a manualised intervention for young people with a parent with cancer responds to a gap in the provision of empirically-based psychological support for this vulnerable group.Australian and New Zealand Clinical Trials Registry ACTRN12615000761561. Registered 22(nd) July 2015.

  View details for DOI 10.1186/s40359-015-0087-y

  View details for PubMedID 26353784

  View details for PubMedCentralID PMC4564955

• Management of fever and neutropenia in children with cancer. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Vedi, A., Pennington, V., O'Meara, M., Stark, K., Senner, A., Hunstead, P., Adnum, K., Londall, W., Maurice, L., Wakefield, C., Cohn, R. J. 2015; 23 (7): 2079-87

  Abstract

  Febrile neutropenia remains a common, life-threatening complication of chemotherapy in paediatric oncology. Delays in institution of empiric antibiotics have been identified at tertiary and regional centres caring for these patients and associated with decreased survival. Our objective was to reduce the time to administration of empiric antibiotics to less than 60 min from the time of presentation to hospital.A retrospective study of the records of oncology patients presenting to the emergency department of a tertiary hospital over a 3-month period was performed and time to first antibiotic administration recorded. Potential causes of delay in commencement of antibiotics were identified and an algorithm-based approach to the management of fever in immunocompromised children developed and implemented. Follow-up evaluation data were collected at 12 and 60 months post-intervention. Causes of delay in commencement of antibiotics at regional hospitals that share care with the tertiary hospital were identified through questionnaires, interviews and focus groups, involving patients and medical and nursing staff. The impact of the introduction of the algorithm at one peripheral hospital was evaluated.The mean time to empiric antibiotics was reduced from 148 min (95% confidence interval (CI) 81-216) at baseline to 76 min (95% CI 50-101) at 12 months post-intervention and sustained at 65 min (95% CI 52-77) 5 years after the intervention. At the peripheral hospital, mean time to antibiotic delivery was reduced from 221 min (95% CI 114-328) to 65 min (95% CI 42-87) at 12 months after the intervention.The introduction of the guideline, with teaching and support for staff and parents, resulted in an improvement in practice, meeting international guidelines and achieving sustained results at 5 years after introduction at a tertiary hospital. The guideline has been shown to be feasible and effective at a regional hospital.

  View details for DOI 10.1007/s00520-014-2572-x

  View details for PubMedID 25533581

• Patient-reported depression measures in cancer: a meta-review. The lancet. Psychiatry Wakefield, C. E., Butow, P. N., Aaronson, N. A., Hack, T. F., Hulbert-Williams, N. J., Jacobsen, P. B. 2015; 2 (7): 635-47

  Abstract

  The patient-reported depression measures that perform best in oncology settings have not yet been identified. We did a meta-review to integrate the findings of reviews of more than 50 depression measures used in adults with, or recovering from, any type of cancer. We searched Medline, PsycINFO, Embase, and grey literature from 1999 to 2014 to identify 19 reviews representing 372 primary studies. 11 reviews were rated as being of high quality (defined as meeting at least 20 criteria in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement). The Hospital Anxiety Depression Scale (HADS) was the most thoroughly evaluated measure, but was limited by cutpoint variability. The HADS had moderate screening utility indices and was least recommended in advanced cancer or palliative care. The Beck Depression Inventory was more generalisable across cancer types and disease stages, with good indices for screening and case finding. The Center for Epidemiologic Studies Depression Scale was the best-weighted measure in terms of responsiveness. This meta-review provides a comprehensive overview of the strengths and limitations of available depression measures. It can inform the choice of the best measure for specific settings and purposes.

  View details for DOI 10.1016/S2215-0366(15)00168-6

  View details for PubMedID 26303561

• Parent feeding interactions and practices during childhood cancer treatment. A qualitative investigation. Appetite Fleming, C. A., Cohen, J., Murphy, A., Wakefield, C. E., Cohn, R. J., Naumann, F. L. 2015; 89: 219-25

  Abstract

  In the general population it is evident that parent feeding practices can directly shape a child's life long dietary intake. Young children undergoing childhood cancer treatment may experience feeding difficulties and limited food intake, due to the inherent side effects of their anti-cancer treatment. What is not clear is how these treatment side effects are influencing the parent-child feeding relationship during anti-cancer treatment. This retrospective qualitative study collected telephone based interview data from 38 parents of childhood cancer patients who had recently completed cancer treatment (child's mean age: 6.98 years). Parents described a range of treatment side effects that impacted on their child's ability to eat, often resulting in weight loss. Sixty-one percent of parents (n = 23) reported high levels of stress in regard to their child's eating and weight loss during treatment. Parents reported stress, feelings of helplessness, and conflict and/or tension between parent and the child during feeding/eating interactions. Parents described using both positive and negative feeding practices, such as: pressuring their child to eat, threatening the insertion of a nasogastric feeding tube, encouraging the child to eat and providing home cooked meals in hospital. Results indicated that parent stress may lead to the use of coping strategies such as positive or negative feeding practices to entice their child to eat during cancer treatment. Future research is recommended to determine the implication of parent feeding practice on the long term diet quality and food preferences of childhood cancer survivors.

  View details for DOI 10.1016/j.appet.2014.12.225

  View details for PubMedID 25576664

• Dental hygiene in childhood cancer survivors: the importance of tertiary long term follow-up care. Pediatric blood & cancer Signorelli, C., McLoone, J. K., Wakefield, C. E., Cohn, R. J. 2015; 62 (5): 921

  View details for DOI 10.1002/pbc.25421

  View details for PubMedID 25663580

• Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: study protocol for a randomised controlled trial. Trials Wakefield, C. E., Sansom-Daly, U. M., McGill, B. C., McCarthy, M., Girgis, A., Grootenhuis, M., Barton, B., Patterson, P., Osborn, M., Lowe, C., Anazodo, A., Miles, G., Cohn, R. J. 2015; 16: 153

  Abstract

  Due to advances in multimodal therapies, most children survive cancer. In addition to the stresses of diagnosis and treatment, many families are now navigating the challenges of survivorship. Without sufficient support, the ongoing distress that parents experience after their child's cancer treatment can negatively impact the quality of life and psychological wellbeing of all family members.The 'Cascade' (Cope, Adapt, Survive: Life after C AncEr) study is a three-arm randomised controlled trial to evaluate the feasibility and efficacy of a new intervention to improve the quality of life of parents of young cancer survivors. Cascade will be compared to a peer-support group control and a 6-month waitlist control. Parents (n = 120) whose child (under 16 years of age) has completed cancer treatment in the past 1 to 12 months will be recruited from hospitals across Australia. Those randomised to receive Cascade will participate in four, weekly, 90-minute online group sessions led live by a psychologist. Cascade involves peer discussion on cognitive-behavioural coping skills, including behavioural activation, thought challenging, mindfulness and acceptance, communication and assertiveness skills training, problem-solving and goal-setting. Participants randomised to peer support will receive four, weekly, 90-minute, live, sessions of non-directive peer support. Participants will complete measures at baseline, directly post-intervention, one month post-intervention, and 6 months post-intervention. The primary outcome will be parents' quality of life. Secondary outcomes include parent depression, anxiety, parenting self-agency, and the quality of life of children in the family. The child cancer survivor and all siblings aged 7 to 15 years will be invited to complete self-report quality of life measures covering physical, emotional, social and school-related domains.This article reviews the empirical rationale for group-based, online cognitive-behavioural therapy in parents of children who have recently finished cancer treatment. The potential challenges of delivering skills-based programs online are highlighted. Cascade's videoconferencing technology has the potential to address the geographic and psychological isolation of families after cancer treatment. Teaching parents coping skills as they resume their normal lives after their child's cancer may see long-term benefits for the quality of life of the family as a whole.ACTRN12613000270718 (registered 6 March 2013).

  View details for DOI 10.1186/s13063-015-0681-6

  View details for PubMedID 25872773

  View details for PubMedCentralID PMC4395969

• Hospital-based bereavement services following the death of a child: a mixed study review. Palliative medicine Donovan, L. A., Wakefield, C. E., Russell, V., Cohn, R. J. 2015; 29 (3): 193-210

  Abstract

  There has been a breadth of research on the grief experience of parents following the death of a child. However, the role and impact of hospital-based bereaved services remain unclear.To identify services offered to bereaved families in perinatal, neonatal, and pediatric hospital settings and summarize the psychosocial impact of these services and published recommendations for best practice hospital-based bereavement care.Systematic review of qualitative, quantitative, and mixed method studies guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist and methodological quality appraised in accordance with the Mixed Method Appraisal Tool.MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health, and PsychINFO were searched to find studies describing hospital-based bereavement services/interventions for parents, siblings, and grandparents.In all, 14 qualitative, 6 quantitative, and 10 mixed method studies were identified. Nine descriptive articles were also included. Qualitatively, family members described feeling cared for and supported by staff, a reduction in sense of isolation, and improved coping and personal growth. Quantitatively, bereavement services have most effect for parents experiencing more complex mourning. It is recommended that bereavement services be theoretically driven and evidence based, offer continuity of care prior to and following the death of a child, and provide a range of interventions for the "whole family" and flexibility in service delivery.There is a role for transitional hospital-based services/interventions for families in the lead up to and following the death of a child. Further mixed method research is required to inform best practice bereavement care guidelines in the perinatal, neonatal, and pediatric hospital settings.

  View details for DOI 10.1177/0269216314556851

  View details for PubMedID 25395578

• Thank you for your lovely card: ethical considerations in responding to bereaved parents invited in error to participate in childhood cancer survivorship research. Medicine, health care, and philosophy Wakefield, C. E., McLoone, J. K., Donovan, L. A., Cohn, R. J. 2015; 18 (1): 113-9

  Abstract

  Research exploring the needs of families of childhood cancer survivors is critical to improving the experiences of future families faced by this disease. However, there are numerous challenges in conducting research with this unique population, including a relatively high mortality rate. In recognition that research with cancer survivors is a relational activity, this article presents a series of cases of parents bereaved by childhood cancer who unintentionally received invitations to participate in survivorship research. We explore six ethical considerations, and compare our experiences with that described previously. Our considerations include the sharing of confidential information with external parties to confirm past patients' vital status and appropriate researcher responses to bereaved parents. The management of researchers' emotional safety when working with illness populations and the fact that study invitations can elicit grief responses in non-bereaved families are discussed. To conclude, we argue for the benefits of inviting bereaved parents whose children died after treatment completion in survivorship research. Such parents' early survivorship experiences will otherwise be systemically neglected. We argue that discussing complex cases can assist researchers to protect participants' and researchers' emotional well-being. We hope to contribute to the dearth of discussion about research operating procedures to address these issues.

  View details for DOI 10.1007/s11019-014-9587-4

  View details for PubMedID 25070880

• Online prostate cancer screening decision aid for at-risk men: a randomized trial. Health psychology : official journal of the Division of Health Psychology, American Psychological Association Watts, K. J., Meiser, B., Wakefield, C. E., Barratt, A. L., Howard, K., Cheah, B. C., Mann, G. J., Lobb, E. A., Gaff, C. L., Patel, M. I. 2014; 33 (9): 986-97

  Abstract

  This study examines the efficacy of an online screening decision aid (DA) for men with a family history of prostate cancer.Unaffected Australian men (40-79 years) with at least one affected relative completed the first online questionnaire, were randomized to read either the tailored DA (intervention) or nontailored information about prostate cancer screening (control), then completed a questionnaire postreading and 12 months later. The primary outcome was decisional conflict regarding prostate specific antigen (PSA) testing. The impact of the DA on longitudinal outcomes was analyzed by using random intercept mixed effects models. Logistic and linear regressions were used to analyze the impact of the DA on screening behavior and decision regret. Stage of decision-making was tested as a moderator for decisional conflict and decision regret. The frequency of online material access was recorded.The DA had no effect on decisional conflict, knowledge, inclination toward PSA testing, accuracy of perceived risk, or screening behavior. However, among men considering PSA testing, those who read the DA had lower decision regret compared with men who read the control materials, β = 0.34, p < .001, 95% confidence interval (CI) = [.22, .53].This is the first study to our knowledge to evaluate the uptake and efficacy of an online screening DA among men with a family history of prostate cancer. Men who were undecided about screening at baseline benefitted from the DA, experiencing less regret 12 months later. In relation to decisional conflict, the control materials may have operated as a less complex and equally informative DA.

  View details for DOI 10.1037/a0034405

  View details for PubMedID 24274808

• Grandparents of children with cancer: a controlled study of distress, support, and barriers to care. Psycho-oncology Wakefield, C. E., Drew, D., Ellis, S. J., Doolan, E. L., McLoone, J. K., Cohn, R. J. 2014; 23 (8): 855-61

  Abstract

  For families under stress, positive grandparental relationships provide a valued 'safety net'. However, coping with family stressors can place a heavy burden on older individuals who may be experiencing declining health/energy themselves. This mixed-methods study assessed the prevalence of distress in grandparents of children with, and without, cancer, aiming to identify predictors of grandparental distress and quantify their barriers to care.Two hundred twenty-one grandparents [87 cancer group; 134 controls; mean age 65.47 years (SD = 6.97); 33.5% male] completed self-report questionnaires assessing distress, anxiety, depression, anger, 'need for help', support use, and barriers to psychosocial care.A higher proportion of grandparents in the cancer group reported clinically relevant distress (32.9% vs. 12.7%; p < 0.001), anxiety (48.8% vs. 23.9%; p < 0.001), depression (24.4% vs. 6.0%; p < 0.001), and anger (23.5% vs. 6.8%; p = 0.001). In the cancer group, distress was higher in grandmothers and in families with fewer siblings. Grandparents rarely accessed evidence-based psychosocial support (<5% in both groups), although grandparents of children with cancer were more likely to seek religious/spiritual support. Barriers to help seeking included lack of knowledge and rurality. Grandparents of children with cancer qualitatively described undisclosed feelings of uncertainty and helplessness and provided advice to other grandparents to facilitate their coping.Grandparents of children with cancer were clearly more distressed than controls. Grandparents' capacity to support their families may be limited by their own, untreated, distress.

  View details for DOI 10.1002/pon.3513

  View details for PubMedID 24634367

• It's more than dollars and cents: the impact of childhood cancer on parents' occupational and financial health. Journal of psychosocial oncology Wakefield, C. E., McLoone, J. K., Evans, N. T., Ellis, S. J., Cohn, R. J. 2014; 32 (5): 602-21

  Abstract

  Few studies have evaluated the impact of childhood cancer on parents' occupational/financial status. This study explored parents' occupational/financial experiences posttreatment. Semistructured interviews were administered to 78 parents (44 mothers) of childhood cancer survivors diagnosed in the preceding 5 years. Transcripts were organized into themes using QSR NVivo8. Parents reported familial, psychological, and practical factors affecting their ability to return to work. Prioritizing family, reinstigating career progression, and negative workplace attitudes were particularly challenging. Parents of children with cancer experience substantial work-family conflict after their child's physical recovery from cancer. Family friendly policies and further research are recommended.

  View details for DOI 10.1080/07347332.2014.936653

  View details for PubMedID 24988134

• Neuropsychology reports for childhood brain tumor survivors: implementation of recommendations at home and school. Pediatric blood & cancer Cheung, L. L., Wakefield, C. E., Ellis, S. J., Mandalis, A., Frow, E., Cohn, R. J. 2014; 61 (6): 1080-7

  Abstract

  As pediatric brain tumor survivors may experience cognitive decline post-treatment, a neuropsychology assessment is often conducted. The assessment evaluates the child's cognitive functioning and highlights potential challenges. Whilst neuropsychology reports provide recommendations for the home and school, how this translates in practice is under researched. This study explored parent and teacher understanding of neuropsychology reports, implementation rates for recommendations and their perceived effectiveness. Barriers to implementation were also investigated.Twenty-five semi-structured interviews were conducted with 17 parents and 8 teachers of childhood brain tumor survivors from 15 Australian families who had received a neuropsychology report within 2 years of the interview. Twenty-four neuropsychology reports encompassing 131 recommendations were reviewed. The qualitative methodological framework of Miles and Huberman [Miles M, Huberman A. Qualitative data analysis: An expanded sourcebook. London: Sage; 1994] was used to analyze interview transcripts with QSR NVivo 9.0.The majority of parents and teachers had a sound understanding of the report. Implementation of recommendations at home and school was 47% and 41%, respectively. Recommendations that did not require extra effort and organization appeared more likely to be implemented, however, those perceived to be more effective or helpful did not necessarily have higher implementation rates. Key reported barriers to implementation barrier were patient reluctance, and a lack of parents' willingness to adopt the recommendation.Patient understanding and willingness play a significant role in the implementation of neuropsychology recommendations. Collaboration and clear communication between the patient, teacher, parent, and neuropsychologist is vital for effective management.

  View details for DOI 10.1002/pbc.24940

  View details for PubMedID 24453059

• 'What they're not telling you': a new scale to measure grandparents' information needs when their grandchild has cancer. Patient education and counseling Wakefield, C. E., Drew, D., Ellis, S. J., Doolan, E. L., McLoone, J. K., Cohn, R. J. 2014; 94 (3): 351-5

  Abstract

  To determine the information needs and preferences of grandparents of children with cancer, to identify clinically useful predictors of high information need, and to develop the first validated scale to assess grandparents' information needs regarding their grandchild's cancer.Grandparents of children with cancer completed a questionnaire, including a newly developed instrument to measure information needs.Eighty-seven grandparents participated (mean age 65.02 years, range 46-81, 31% male). Grandparents' information needs were high, especially among young and paternal grandparents. Grandparents' greatest need was for information pertaining to their grandchild's chance of survival (81.6% reported "high need"), possible consequences of the child's cancer (81.6%), and phases of their treatment (72.4%). Ninety-three percent endorsed the development of a grandparents' booklet, distributed at diagnosis and available online.Grandparents of children with cancer desire more information for their own reassurance, to reduce their reliance on 'second-hand' information from their grandchild's parents and to improve the support they provide their families. Grandparents strongly endorse the development of grandparent-targeted educational resources.Administration of this short, 15-item questionnaire can help staff identify the information needs of grandparents. Findings will inform the development of evidence-based resources for this important (but oft-neglected) population.

  View details for DOI 10.1016/j.pec.2013.10.030

  View details for PubMedID 24315159

• Imagining the future in health anxiety: the impact of rumination on the specificity of illness-related memory and future thinking. Anxiety, stress, and coping Sansom-Daly, U. M., Bryant, R. A., Cohn, R. J., Wakefield, C. E. 2014; 27 (5): 587-600

  Abstract

  Individuals with health anxiety experience catastrophic fears relating to future illness. However, little research has explored cognitive processes involved in how health anxious individuals picture the future. Ruminative thinking has been shown to impede the ability to recall specific autobiographical memories, which in turn is related to maladaptive, categoric future thinking processes. This study examined the impact of rumination on memory and future thinking among 60 undergraduate participants with varying health anxiety (35% clinical-level health anxiety). Participants were randomized to experiential/ruminative self-focus conditions, then completed an Autobiographical Memory Test and Future Imaginings Task. Responses were coded for specificity and the presence of illness concerns. Rumination led to more specific illness-concerned memories overall, yet at the same time led to more categoric illness-related future imaginings. Rumination and health anxiety together best predicted overgeneral illness-related future imaginings. Highly specific illness-related memories may be maintained due to their personal salience. However, more overgeneral illness-related future imaginings may reflect cognitive avoidance in response to the threat of future illness. This divergent pattern of results between memory and future imaginings may exacerbate health anxiety, and may also serve to maintain maladaptive responses among individuals with realistic medical concerns, such as individuals living with chronic illness.

  View details for DOI 10.1080/10615806.2014.880111

  View details for PubMedID 24392700

• Distress and adjustment among adolescents and young adults with cancer: an empirical and conceptual review. Translational pediatrics Sansom-Daly, U. M., Wakefield, C. E. 2013; 2 (4): 167-97

  Abstract

  Adolescents and young adults (AYAs) with cancer must simultaneously navigate the challenges associated with their cancer experience, whilst striving to achieve a number of important developmental milestones at the cusp of adulthood. The disruption caused by their cancer experience at this critical life-stage is assumed to be responsible for significant distress among AYAs living with cancer. The quality and severity of psychological outcomes among AYAs remain poorly documented, however. This review examined the existing literature on psychological outcomes among AYAs living with cancer. All psychological outcomes (both distress and positive adjustment) were included, and AYAs were included across the cancer trajectory, ranging from newly-diagnosed patients, to long-term cancer survivors. Four key research questions were addressed. Section 1 answered the question, "What is the nature and prevalence of distress (and other psychological outcomes) among AYAs living with cancer?" and documented rates of clinical distress, as well as evidence for the trajectory of this distress over time. Section 2 examined the individual, cancer/treatment-related and socio-demographic factors that have been identified as predictors of these outcomes in this existing literature. Section 3 examined current theoretical models relevant to explaining psychological outcomes among AYAs, including developmental models, socio-cognitive and family-systems models, stress-coping frameworks, and cognitive appraisal models (including trauma and meaning making models). The mechanisms implicated in each model were discussed, as was the existing evidence for each model. Converging evidence implicating the potential role of autobiographical memory and future thinking systems in how AYAs process and integrate their cancer experience into their current sense of self and future goals are highlighted. Finally, Section 4 addressed the future of psycho-oncology in understanding and conceptualizing psychological outcomes among AYAs living with cancer, by discussing recent empirical advancements in adjacent, non-oncology fields that might improve our understanding of psychological outcomes in AYAs living with cancer. Included in these were models of memory and future thinking drawn from the broader psychology literature that identify important mechanisms involved in adjustment, as well as experimental paradigms for the study of these mechanisms within analogue, non-cancer AYA samples.

  View details for DOI 10.3978/j.issn.2224-4336.2013.10.06

  View details for PubMedID 26835313

  View details for PubMedCentralID PMC4729076

• Improving mutation notification when new genetic information is identified in research: a trial of two strategies in familial breast cancer. Genetics in medicine : official journal of the American College of Medical Genetics Wakefield, C. E., Thorne, H., Kirk, J., Niedermayr, E., Doolan, E. L., Tucker, K. 2013; 15 (3): 187-94

  Abstract

  The Kathleen Cuningham Foundation Consortium for Research into Familial Aspects of Breast Cancer (kConFab) is a large-scale research study that notifies participants when new, personally relevant, information is discovered. In 2009, the (kConFab) instituted an intensive notification process to ensure at-risk individuals were effectively notified. This study (i) evaluated the impact of intensive notification on genetic testing uptake; (ii) identified those most likely to undergo testing postnotification; and (iii) identified those most likely to acknowledge that they had been notified.Clinical/demographic data were retrieved from the (kConFab) database. Logistic regression analyses were conducted to identify potential predictors of testing uptake and notification acknowledgment using IBM SPSS.A total of 155 of 1,812 individuals underwent testing after standard notification (8.6%). In comparison, 23/291 individuals (7.9%) notified using the "intensive" approach underwent testing (χ(2) = 0.14; P = 0.71). After controlling for notification process, females and participants with a previous cancer were most likely to have undergone testing (P < 0.006). Older individuals (50+ years) were most likely to acknowledge they had been notified (P = 0.038).Increasing the intensity of participant follow-up did not increase genetic testing uptake. The challenge to effectively notify participants, and increase the proportion whose risk is managed clinically, remains, particularly for males and individuals unaffected by cancer.Genet Med 2013:15(3):187-194.

  View details for DOI 10.1038/gim.2012.115

  View details for PubMedID 22975758

• Parental sleep experiences on the pediatric oncology ward. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer McLoone, J. K., Wakefield, C. E., Yoong, S. L., Cohn, R. J. 2013; 21 (2): 557-64

  Abstract

  Parents of pediatric oncology patients are encouraged to sleep on the ward with their child to provide additional care throughout the night. The purpose of this study was to provide the first prevalence estimates of self-reported sleep quantity and quality among parents accommodated on the pediatric oncology ward, compared to parents of age-matched controls.Parents of children receiving in-patient cancer treatment and parents of healthy, age-matched children completed a self-report questionnaire, including validated measures of parental sleep and psychological distress, demographic, and clinical characteristics.In total, 114 parents participated (52 parents of children with cancer; 62 control parents; over all response rate 70 %). Parents on the pediatric oncology ward reported sleeping 5.7 h (SD = 1.8) on average, in comparison to control parents who reported sleeping 7.0 h at home (SD = 1.4; t = 4.3, p < 0.001). Parents reported waking an average of 4.6 times (SD = 0.3) per night on the ward, compared to control parents who reported 2.0 (SD = 0.2) nighttime awakenings (t = 7.69, p < 0.001). Parents of children with cancer were significantly more likely to report that they had slept "badly" (67.3 versus 21.0 %; χ(2) = 21.9, p < 0.001). Significant predictors of sleep duration included anxiety (p = 0.013) and caffeine consumption (p = 0.017). Parents who slept on the ward attributed poor sleep to feelings of anxiety, environmental noise, and child-related factors.Parents who sleep on the pediatric oncology ward experience poor sleep outcomes, including inadequate duration and frequent interruptions. The detrimental effects of sleep deprivation on parents' ability to cope during this challenging time require further investigation and intervention.

  View details for DOI 10.1007/s00520-012-1547-z

  View details for PubMedID 22864535

• A systematic review of psychological interventions for adolescents and young adults living with chronic illness. Health psychology : official journal of the Division of Health Psychology, American Psychological Association Sansom-Daly, U. M., Peate, M., Wakefield, C. E., Bryant, R. A., Cohn, R. J. 2012; 31 (3): 380-93

  Abstract

  There is increasing recognition that adolescents and young adults (AYAs) with chronic illnesses experience common psychological challenges. This article reviewed published psychological interventions for AYAs with cancer, diabetes, juvenile idiopathic arthritis, sickle cell disease, and asthma. Common, efficacious intervention components were examined to generate clearer recommendations for future age-appropriate, evidence-based intervention development.Five databases including MEDLINE, MEDLINE In Process & Non-Indexed Citations, PsycINFO, EMBASE, and CINAHL, were searched for studies involving AYAs aged 10-30 years, using quantitative two-group methods, published from 1979-2010. Of 1,233 abstracts, 87 were extracted for further analysis and a final 25 studies were eligible for inclusion. Thirteen of these studies included AYAs with diabetes, 7 studies involved AYAs with cancer, and 5 included AYAs with other illnesses.Educational interventions showed some significant positive results, particularly when targeted knowledge outcomes were measured. Several skills-based programs, some including parents, showed positive results, with moderate effect sizes. Interventions which taught communication skills, incorporated practical components (e.g., role-plays, homework), involved ≥6 sessions, and spanned at least 3 months in length, appeared more likely to achieve positive outcomes.Skills-based interventions delivered over multiple sessions may yield the most positive results in AYAs with chronic illness. Given the few peer-support groups eligible for review, their efficacy remains unclear. This review points to the need for intervention development that teaches adaptive coping skills, is grounded in theoretical frameworks, and adheres to strict randomization and independent assessments to evaluate efficacy in assisting AYAs adjust to chronic illness.

  View details for DOI 10.1037/a0025977

  View details for PubMedID 22059621

• Family information needs at childhood cancer treatment completion. Pediatric blood & cancer Wakefield, C. E., Butow, P., Fleming, C. A., Daniel, G., Cohn, R. J. 2012; 58 (4): 621-6

  Abstract

  Despite the recognized importance of information provision across the cancer trajectory, little research has investigated family information needs recently after childhood cancer. This mixed-methods, multiperspective, study explored the information needs of families of childhood cancer survivors in the first year post-treatment.In total, 112 semi-structured telephone interviews were conducted with 19 survivors (mean age 16.2 years, off treatment for ≤36 months), 44 mothers, 34 fathers, and 15 siblings. Interviews were analyzed inductively, line-by-line, using the framework of Miles and Huberman. Emergent themes were cross-tabulated by sample characteristics using QSR NVivo8.Participant views were mixed regarding the need for a "finishing treatment review" with their oncologist (the primary information source for most families); however, many mothers (29/44) and fathers (17/34) and most siblings (14/15) reported receiving insufficient information post-treatment. Information regarding fertility and how to prepare for likely post-treatment challenges were the most cited unmet needs. Online support was ranked highest by survivors (mean score: 7/2/10) and siblings (7.4/10), whilst parents preferred an information booklet (often due to concerns about accessing accurate and relevant information from the Internet). While many participants reported feelings of isolation/loneliness, many were reluctant to attend face-to-face support groups/seminars.Family members of survivors may experience the most acute unmet needs for information about fertility and in preparation for post-treatment challenges. However, provision of the correct amount of information at the right time for each family member during a highly stressful period remains clinically challenging.

  View details for DOI 10.1002/pbc.23316

  View details for PubMedID 21910212

• Religious and ethnic influences on willingness to donate organs and donor behavior: an Australian perspective PROGRESS IN TRANSPLANTATION Wakefield, C. E., Reid, J., Homewood, J. 2011; 21 (2): 161-168

  Abstract

  Globally, the demand for donated organs outstrips supply, meaning that there are both practical and theoretical reasons for examining factors that are predictive of individuals' willingness to donate their organs upon their death.To determine whether individuals of different religious denominations living in Australia have different views on organ donation, whether donation attitudes differ significantly across ethnic groups, and whether factors identified in international research are predictors of willingness to donate and actual donor behavior in this population.Data for this study were collected from students at an Australian university from a range of religious and ethnic backgrounds, and their friends and relatives (N = 509). Intervention-Participants were administered the Organ Donation Attitude Scale, as well as additional attitudes and knowledge measures.Self-reported "willingness to donate" and "donor behavior".Our findings complemented those reported in comparable countries, with females, younger Australians, and those with high knowledge levels being more willing to donate than males, older persons, and those with low knowledge. Persons who described themselves as having stronger religious beliefs (particularly Buddhist and Islamic) held less favorable attitudes toward donation, had lower knowledge levels, and were more likely to oppose donation.Although this study established that attitudes toward, knowledge about, and predictors of organ donation in Australia are similar to those reported elsewhere, donation rates remain low. Further in-depth research examining the impact of religion and culture on attitudes, beliefs, and behavior is essential when exploring strategies to improve organ donation rates in highly multicultural societies such as Australia.

  View details for Web of Science ID 000291577600013

  View details for PubMedID 21736247

• "For all my family's sake, I should go and find out": an Australian report on genetic counseling and testing uptake in individuals at high risk of breast and/or ovarian cancer. Genetic testing and molecular biomarkers Wakefield, C. E., Ratnayake, P., Meiser, B., Suthers, G., Price, M. A., Duffy, J., Tucker, K. 2011; 15 (6): 379-85

  Abstract

  Despite proven benefits, the uptake of genetic counseling and testing by at-risk family members of BRCA1 and BRCA2 mutation carriers remains low.This study aimed to examine at-risk individuals' reported reasons for and against familial cancer clinic (FCC) attendance and genetic testing.Thirty-nine telephone interviews were conducted with relatives of high-risk mutation carriers, 23% (n = 9) of whom had not previously attended an FCC. Interview responses were analyzed using the frameworks of Miles and Huberman.The reasons most commonly reported for FCC attendance were for clarification of risk status and to gain access to testing. While disinterest in testing was one reason for FCC nonattendance, several individuals were unaware of their risk (n = 3) or their eligibility to attend an FCC (n = 2), despite being notified of their risk status through their participation in a large-scale research project. Individuals' reasons for undergoing testing were in line with that reported elsewhere; however, concerns about discrimination and insurance were not reported in nontestees.Current guidelines regarding notifying individuals discovered to be at increased risk in a research, rather than clinical setting, take a largely nondirective approach. However, this study demonstrates that individuals who receive a single letter notifying them of their risk may not understand/value the information they receive.

  View details for DOI 10.1089/gtmb.2010.0158

  View details for PubMedID 21254855

• Returning to School After Adolescent Cancer: A Qualitative Examination of Australian Survivors' and Their Families' Perspectives. Journal of adolescent and young adult oncology McLoone, J. K., Wakefield, C. E., Butow, P., Fleming, C., Cohn, R. J. 2011; 1 (2): 87-94

  Abstract

  To examine key factors related to adolescent cancer survivors' return to school after cancer treatment completion, which can be a time of complex transition.Seventy semi-structured interviews were conducted with 19 adolescent cancer survivors (mean age 16.1 years), 21 mothers, 15 fathers, and 15 siblings from 22 Australian families. The conceptual framework of Miles and Huberman (1994) was employed to analyze interview data and emergent themes were organized using the software package QSR NVivo 8.0.Barriers to successful school re-entry included symptoms of fatigue, anxiety (particularly regarding examinations), and poor communication between families and the broader school community. Changing grade or school typically extinguished pre-existing support networks and was perceived by parents as a period of unmet need. Support from friends, teachers, tutors, and the hospital outreach nurse were seen as instrumental in creating a positive school re-entry experience. However, the majority of participants reported that support from the school counselor was minimal. Siblings reported this period as relatively non-impactful regarding their own education.Additional support is needed to help parents navigate the education system and to advocate effectively for their child's academic needs beyond the immediate re-entry period. There is strong potential for school counselors to increase the level of support they provide adolescents and their parents during the school re-entry period. The impact of this period on siblings' education is under-studied and warrants further research.

  View details for DOI 10.1089/jayao.2011.0006

  View details for PubMedID 26812630

• Women's knowledge, beliefs, and information needs in relation to the risks and benefits associated with use of the oral contraceptive pill. Journal of women's health (2002) Philipson, S., Wakefield, C. E., Kasparian, N. A. 2011; 20 (4): 635-42

  Abstract

  Use of the oral contraceptive pill (OCP) is associated with numerous health benefits as well as risks, and it is important that women take these into consideration when making informed contraceptive choices.A questionnaire assessing contraceptive practices, knowledge and beliefs about the risks and benefits of OCP use, and information needs and preferences was distributed to 1200 Australian women aged 18-50 years.Of the 305 women who returned the questionnaire, 93% had used the OCP at some time in their lives, with 32% reporting current usage. Only 50% of women reported satisfaction with previously accessed information about the OCP. Less than 40% of the sample reported a high level of confidence in their knowledge of the risks, benefits, and side effects of OCP use. Factors associated with greater OCP knowledge included being married (β=1.74, 95% confidence interval [CI] 1.11-2.72), having a university education (β=2.20, 95% CI 1.49-3.24), longer duration of OCP use (β=1.06, 95% CI 1.02-1.09), and having greater confidence in one's knowledge about the OCP (β=1.70, 95% CI 1.38-2.09), whereas depressive symptoms were associated with lower knowledge (β=0.93, 95% CI 0.88-0.99). Preferred formats for the communication of OCP-related information were the internet and an information booklet.The findings provide an evidence base for the future development of simple and appropriate tools by which to communicate information about the health benefits and risks of OCP use to women.

  View details for DOI 10.1089/jwh.2010.2455

  View details for PubMedID 21410331

• Parental Adjustment to the Completion of Their Child's Cancer Treatment PEDIATRIC BLOOD & CANCER Wakefield, C. E., McLoone, J. K., Butow, P., Lenthen, K., Cohn, R. J. 2011; 56 (4): 524-531

  Abstract

  Childhood cancer treatment completion is a significant milestone. However, coming off treatment may be a time of psychological vulnerability for parents. This review assesses published research (1979-2009) on the psychosocial impact of treatment completion on parents. Fifteen articles met all inclusion criteria and demonstrated that while they celebrate treatment completion, parents (particularly mothers) can experience significant distress, including fear of recurrence, fatigue, and loneliness. Distress appears to ease with time, possibly as the perceived risk of relapse declines. Continued psychosocial support specifically targeting parents' risk perceptions, physical and emotional fatigue, social isolation, and parenting concerns post-treatment is warranted.

  View details for DOI 10.1002/pbc.22725

  View details for Web of Science ID 000287986700006

  View details for PubMedID 21298736

• Development and pilot testing of an online screening decision aid for men with a family history of prostate cancer PATIENT EDUCATION AND COUNSELING Wakefield, C. E., Watts, K. J., Meiser, B., Sansom-Daly, U., Barratt, A., Mann, G. J., Lobb, E. A., Gaff, C. L., Howard, K., Patel, M. I. 2011; 83 (1): 64-72

  Abstract

  This study aimed to develop and pilot test an online screening decision aid (DA) for men with a family history of prostate cancer.Eligible men (with no previous prostate cancer diagnosis) were recruited through relatives attending a urology outpatient clinic. Men evaluated the DA in two stages. First, they appraised a paper-based version using a questionnaire (n=22). Second, the same men were asked to reflect on an interactive web-based version via a semi-structured telephone interview (n=20).Men evaluated both forms of the DA positively. Of the paper-based version, the majority of participants found the DA useful (91%), and that it contained enough information to make a screening decision (73%). All participants reported that the online DA was easy to use and navigate. Most participants reported that a website was their preferred mode of receiving prostate cancer screening information (70%).The developed DA may represent the first online decision-making tool designed specifically for men with a family history prostate cancer that presents age and risk specific information to the user.Comprehensive evaluations of the efficacy and impact of educational interventions such as this are crucial to improve services for individuals making informed screening decisions.

  View details for DOI 10.1016/j.pec.2010.05.025

  View details for Web of Science ID 000289026000013

  View details for PubMedID 20580521

• An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations. Familial cancer Ratnayake, P., Wakefield, C. E., Meiser, B., Suthers, G., Price, M. A., Duffy, J., Tucker, K. 2011; 10 (1): 97-105

  Abstract

  The responsibility for informing at-risk relatives of the availability of genetic testing for breast/ovarian cancer gene (BRCA1 or BRCA2) mutations currently falls on the probands. This study explored the support needs of individuals from families with identified BRCA1 or BRCA2 mutations when communicating about genetic risk and genetic testing with at-risk family members. Thirty-nine semi-structured telephone interviews were conducted with individuals from families with identified BRCA mutations. Interview responses were cross-tabulated by sample characteristics using the qualitative research analysis software NVivo8. The development of educational materials, which individuals could use when communicating the risks of carrying a BRCA gene mutation with their relatives, was identified as a specific need. Many participants expressed a preference for a staged approach, where relatives are notified of their increased risk and the availability of genetic testing risk either face-to-face or via a letter, with additional educational sources, including brief written information or access to a website, made available for those wishing to access more in-depth information. This research identified a need for the development of educational/informational resources to support individuals with identified breast/ovarian cancer mutations to communicate with their at-risk relatives about genetic risk and genetic testing availability.

  View details for DOI 10.1007/s10689-010-9383-0

  View details for PubMedID 20878485

• Attitudes toward organ donation and donor behavior: a review of the international literature PROGRESS IN TRANSPLANTATION Wakefield, C. E., Watts, K. J., Homewood, J., Meiser, B., Siminoff, L. A. 2010; 20 (4): 380-391

  Abstract

  To conduct a systematic review of published research that assessed the predictors of attitudes toward deceased organ donation, willingness to donate, and donor behavior.MEDLINE, PreMEDLINE, PsycInfo, and the Cumulative Index to Nursing and Allied Health Literature were searched for the period from 1988 to 2009.Eligible studies included members of the general public (i.e., not transplant recipients, donor families, or health professionals) and used multivariate analyses for quantitative assessment of predictors. Data Extraction-The search identified 33 relevant studies. Owing to heterogeneity in populations and measures, results were summarized rather than subjected to meta-analysis.Research suggests that individuals who are younger, female, have higher education levels and socioeconomic status, hold fewer religious beliefs, have high knowledge levels, know others with positive attitudes, are more altruistic, and have fewer concerns about manipulation of the body of the deceased donor are more likely to have positive attitudes toward donation and are more willing to donate their organs.The review revealed the complexity of individuals' attitudes toward donation and the need for more sophisticated future studies of the interactions between the broader factors influencing donation (such as social norms and existing legislation in each country) and individual factors, such as attitudes and beliefs. (Progress in Transplantation.

  View details for Web of Science ID 000285567600012

  View details for PubMedID 21265292

• Time perspective in hereditary cancer: psychometric properties of a short form of the Zimbardo Time Perspective Inventory in a community and clinical sample. Genetic testing and molecular biomarkers Wakefield, C. E., Homewood, J., Taylor, A., Mahmut, M., Meiser, B. 2010; 14 (5): 617-27

  Abstract

  We aimed to assess the psychometric properties of a 25-item short form of the Zimbardo Time Perspective Inventory in a community sample (N = 276) and in individuals with a strong family history of cancer, considering genetic testing for cancer risk (N = 338).In the community sample, individuals with high past-negative or present-fatalistic scores had higher levels of distress, as measured by depression, anxiety, and aggression. Similarly, in the patient sample, past-negative time perspective was positively correlated with distress, uncertainty, and postdecision regret when making a decision about genetic testing. Past-negative-oriented individuals were also more likely to be undecided about, or against, genetic testing. Hedonism was associated with being less likely to read the educational materials they received at their clinic, and fatalism was associated with having lower knowledge levels about genetic testing.The assessment of time perspective in individuals at increased risk of cancer can provide valuable clinical insights. However, further investigation of the psychometric properties of the short form of this scale is warranted, as it did not meet the currently accepted criteria for psychometric validation studies.

  View details for DOI 10.1089/gtmb.2009.0185

  View details for PubMedID 20722497

• The psychosocial impact of completing childhood cancer treatment: a systematic review of the literature. Journal of pediatric psychology Wakefield, C. E., McLoone, J., Goodenough, B., Lenthen, K., Cairns, D. R., Cohn, R. J. 2010; 35 (3): 262-74

  Abstract

  To review the results of any published research study examining the psychosocial functioning of children who have recently completed cancer treatment.Five electronic databases were searched (from 1978 to 2008). Of 1,734 identified articles, 19 met all inclusion criteria. Four articles utilized a qualitative methodology, thirteen utilized a quantitative methodology, and two used mixed methods.Children may experience positive psychosocial outcomes on treatment completion, including high self-worth, good behavioral conduct, and improved mental health and social behavior. However, they may also experience significant negative outcomes, including lower levels of psychological well-being, mood, liveliness, self-esteem, and motor and physical functioning, as well as increased anxiety, problem behaviors, and sleeping difficulties.Completing treatment can be a psychologically complex time for children as they wait to make the transition from "cancer patient" to long-term "cancer survivor." Further high-quality research targeting the needs of these children is warranted.

  View details for DOI 10.1093/jpepsy/jsp056

  View details for PubMedID 19578137

• Men at increased risk of developing breast cancer: language preferences for naming a cancer-related mutation. Genetic testing and molecular biomarkers Wakefield, C. E., Juan, A. S., Kasparian, N. A. 2009; 13 (3): 395-8

  Abstract

  Patients attending familial cancer clinics may find the term "mutation" offensive and potentially stigmatizing, yet there is little consensus in the literature as to the most appropriate alternative terms to describe a cancer-related mutation to individuals considering genetic testing for cancer risk. This study aimed to describe a cancer-related mutation in a rare group of familial cancer clinic patients: men at increased risk of carrying a breast cancer-related mutation.Twenty-seven men completed a self-report questionnaire that assessed their preferences for language to describe a cancer-related mutation.Overall, men were most likely to spontaneously suggest the term "faulty gene" to describe a cancer-related mutation when asked an open-ended question about their language preferences. When asked to rate the term "faulty gene" in comparison to the terms "altered gene," "mutation," "nonworking gene," "malfunctioning gene," and "gene change," the term "faulty gene" received the highest mean preference rating in this sample of men at increased risk of developing breast cancer.This area of investigation remains controversial and would benefit from more formal and larger-scale investigations of the language preferences of individuals at increased risk of developing cancer.

  View details for DOI 10.1089/gtmb.2008.0152

  View details for PubMedID 19473083

• Development and pilot testing of a decision aid for men considering genetic testing for breast and/or ovarian cancer-related mutations (BRCA1/2). Genetic testing Juan, A. S., Wakefield, C. E., Kasparian, N. A., Kirk, J., Tyler, J., Tucker, K. 2008; 12 (4): 523-32

  Abstract

  Despite the fact that both men and women can carry a breast/ovarian cancer-related mutation, the main emphasis in genetic counseling for breast/ovarian cancer-related risk remains on females. This study aimed to develop and pilot a decision aid specifically designed for men with a strong family history of breast and/or ovarian cancer who are considering genetic testing. The decision aid was developed by a multidisciplinary team of experts and a consumer representative. It was then reviewed by 27 men who had previously undergone genetic testing to identify a mutation in a BRCA1 or BRCA2 gene. All men who reviewed the decision aid indicated that they would recommend the booklet to other men in the same situation, and 96% of the sample (n = 26) reported being "very satisfied" or "satisfied" with the information contained in the decision aid. The decision aid was perceived by all participants as "very relevant" or "quite relevant" for men considering genetic testing. Ninety-three percent of men felt that it was easy to weigh the pros and cons of genetic testing with the help of the decision aid. The perceived impact on participants' emotions and understanding of the genetic testing process was also assessed. Several factors may hinder men from effectively weighing up the potential benefits and risks of genetic testing. A greater understanding of these issues may help health professionals to encourage men with a strong family history of breast and/or ovarian cancer to learn about cancer risk and the appropriate management strategies for themselves and their female relatives.

  View details for DOI 10.1089/gte.2008.0035

  View details for PubMedID 19072564

• Randomized trial of a decision aid for individuals considering genetic testing for hereditary nonpolyposis colorectal cancer risk. Cancer Wakefield, C. E., Meiser, B., Homewood, J., Ward, R., O'Donnell, S., Kirk, J. 2008; 113 (5): 956-65

  Abstract

  Despite the potential benefits of genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) risk, individuals can find the genetic testing decision-making process complicated and challenging. The goal of the current study was to measure the effectiveness of a tailored decision aid designed specifically to assist individuals to make informed decisions regarding genetic testing for HNPCC risk.In all, 153 individuals were randomized to receive the decision aid or a control pamphlet at the end of their first genetic counseling consultation. Of these, 109 (71.2%) completed the first questionnaire 1 week after consultation, whereas 95 (62.1%) completed the 6-month follow-up questionnaire.Although the decision aid had no significant effect on postdecisional regret or actual genetic testing decision, the trial results demonstrated that participants who received the decision aid had significantly lower levels of decisional conflict (ie, uncertainty) regarding genetic testing (chi-square(1) = 8.97; P = .003) and were more likely to be classified as having made an informed choice concerning genetic testing (chi-square(1) = 4.37; P = .037) than participants who received a control pamphlet. Also, men who received the decision aid had significantly higher knowledge levels regarding genetic testing compared with men who received the control pamphlet, whereas no such differences were found for women (chi-square(2) = 6.76; P = .034).A decision aid for individuals considering genetic testing for HNPCC is an effective intervention to reduce uncertainty and assist individuals to make an informed choice regarding genetic testing for HNPCC after genetic counseling.

  View details for DOI 10.1002/cncr.23681

  View details for PubMedID 18618513

• A randomized trial of a breast/ovarian cancer genetic testing decision aid used as a communication aid during genetic counseling. Psycho-oncology Wakefield, C. E., Meiser, B., Homewood, J., Taylor, A., Gleeson, M., Williams, R., Tucker, K. 2008; 17 (8): 844-54

  Abstract

  To evaluate the impact of a decision aid for women considering genetic testing for breast/ovarian cancer risk given during genetic counseling.One hundred and forty-eight women were randomized to receive the decision aid or a control pamphlet at the beginning of their first consultation with a genetic counselor. When the patient received the decision aid, it was used to complement consultation discussions about genetic testing. One hundred and ten (74.3%) women completed the first questionnaire designed to elicit information about women's levels of decisional conflict and knowledge about genetic testing. Of these, 105 (70.9%) completed a second questionnaire to assess longer-term outcomes, 6 months postconsultation.Results showed that women who received the decision aid felt more informed about genetic testing (chi(2)(1)=8.69; P=0.003), had clearer values (chi(2)(1)=6.90; P=0.009) and had higher knowledge levels (chi(2)(2)=6.49; P=0.039) than women who received the control pamphlet.The developed decision aid improved patient outcomes better than a control pamphlet when implemented during genetic counseling and given to the patient to take home.

  View details for DOI 10.1002/pon.1353

  View details for PubMedID 18613319

• A randomized controlled trial of a decision aid for women considering genetic testing for breast and ovarian cancer risk. Breast cancer research and treatment Wakefield, C. E., Meiser, B., Homewood, J., Peate, M., Taylor, A., Lobb, E., Kirk, J., Young, M. A., Williams, R., Dudding, T., Tucker, K. 2008; 107 (2): 289-301

  Abstract

  To measure the effectiveness of a tailored decision aid (DA) designed to help women make informed decisions about genetic testing for breast/ovarian cancer risk.A total of 145 women were randomized to receive the DA or a control pamphlet at the end of their first genetic counseling consultation. Of these, 120 (82.8%) completed two questionnaires, 1 week and 6 months post-consultation.While the DA had no effect on informed choice, post-decisional regret or actual genetic testing decision, the trial showed that women who received the DA had higher knowledge levels and felt more informed about genetic testing than women who received the control pamphlet (chi(2)(2) = 6.82; P = 0.033; chi(2)(1) = 4.86; P = 0.028 respectively). The DA also helped women who did not have blood drawn at their first consultation to clarify their values with regards to genetic testing (chi(2)(1) = 5.27; P = 0.022). Women who received the DA were less likely to share the information with other family members than women in the control condition (chi(2)(1) = 8.78; P = 0.003).Decision aids are an effective decision-support strategy for women considering genetic testing for breast/ovarian cancer risk, and are most effective before the patient has made a decision, which is generally at the point of having blood drawn.

  View details for DOI 10.1007/s10549-007-9539-2

  View details for PubMedID 17333332

• Assessment of psychosocial outcomes in genetic counseling research: an overview of available measurement scales. Journal of genetic counseling Kasparian, N. A., Wakefield, C. E., Meiser, B. 2007; 16 (6): 693-712

  Abstract

  The aim of the present paper was to describe and evaluate many of the measurement scales currently used in genetic counseling outcomes research. A team of three researchers reviewed the available literature and selected a variety of validated instruments suitable for measurement of genetic counseling outcomes. There are numerous scales to assess each of the following outcomes among counselees: satisfaction with genetic counseling; knowledge; decision-making; psychological adjustment; coping; perceived personal control; perceptions of disease risk; and family communication about genetic risk. However, the strengths and limitations inherent to each instrument warrant careful consideration prior to implementation. In the genetic counseling context, scale selection should be undertaken with thought directed towards the characteristics of the research sample (e.g. levels of literacy, culture, medical condition), the practicalities of the research setting (e.g. available funding and resources, time restrictions, researcher expertise), the purpose of the research (i.e. the specific aspect of the genetic counseling experience to be studied), and the science underlying the scale (e.g. theoretical framework, psychometric properties).

  View details for DOI 10.1007/s10897-007-9111-6

  View details for PubMedID 17694397

• Usefulness of the Threatening Medical Situations Inventory in individuals considering genetic testing for cancer risk. Patient education and counseling Wakefield, C. E., Homewood, J., Mahmut, M., Taylor, A., Meiser, B. 2007; 69 (1-3): 29-38

  Abstract

  To assess the psychometric properties of the Threatening Medical Situations Inventory (TMSI) in a community sample (Study 1), and to examine its usefulness in individuals with a strong family history of cancer (Study 2).Study 1 participants (N=276) completed 2 online surveys, 14 days apart. Study 2 participants (N=311) completed 2 questionnaires, 6 months apart.Both studies revealed the inventory was psychometrically sound, although some concerns were raised about the factor structure. High monitors in Study 1 reported desiring more health-related information and an active role in medical decision-making. High monitors in Study 2 had the greatest knowledge increase when they received a detailed decision aid, compared to a brief pamphlet.The TMSI is appropriate for use in both community and clinical samples. High monitors in the general community are more likely to prefer receiving as much health-related information as possible and desire an active role in decision-making about their health.Familial cancer clinic patients may benefit from tailoring the amount of information they receive to their coping style, such that patients who are vigilant information-seekers may benefit most from receiving more detailed information about genetic testing.

  View details for DOI 10.1016/j.pec.2007.07.001

  View details for PubMedID 17706910

• Development and pilot testing of two decision aids for individuals considering genetic testing for cancer risk. Journal of genetic counseling Wakefield, C. E., Meiser, B., Homewood, J., Peate, M., Kirk, J., Warner, B., Lobb, E., Gaff, C., Tucker, K. 2007; 16 (3): 325-39

  Abstract

  Current practice in genetic counseling may not allow a full deliberation of the consequences of decisions about genetic testing for cancer risk, despite increasing demand for these services. Thus, two decision aids for individuals considering genetic testing for hereditary breast/ovarian cancer and hereditary non-polyposis colorectal cancer (HNPCC) susceptibility were developed and pilot tested with 43 individuals who had previously considered genetic testing for these cancer syndromes. A description of the decision aid development process is provided, as well as results of the pilot testing, which assessed participants' perceptions of the decision aids. All participants reported that they would recommend the decision aid to others facing the same situation, and 93% reported that the decision aid would have been relevant during their decision-making. The perceived impact of the decision aids on participants' emotions and understanding of genetic testing were assessed. Limitations of the study and future directions are discussed.

  View details for DOI 10.1007/s10897-006-9068-x

  View details for PubMedID 17318456

• Attitudes toward genetic testing for cancer risk after genetic counseling and decision support: a qualitative comparison between hereditary cancer types. Genetic testing Wakefield, C. E., Kasparian, N. A., Meiser, B., Homewood, J., Kirk, J., Tucker, K. 2007; 11 (4): 401-11

  Abstract

  This study aimed to qualitatively assess individuals' attitudes toward genetic testing for cancer risk after genetic counseling and decision support. As part of a larger study, 78 women considering genetic testing for hereditary breast/ovarian cancer (HBOC) risk and 22 individuals considering genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) completed an open-ended table of their perceived pros and cons of genetic testing. The most frequently reported pros were "to help manage my risk of developing cancer," "to help my family," and "to know my cancer risk." With regards to risk management, the HBOC group perceived genetic testing as most helpful in informing their general risk management practices, while the HN-PCC group focused on the potential to clarify their need for bowel cancer screening, suggesting that patients' perceptions of the benefits of genetic testing may differ across cancer syndromes. Individuals in both groups expressed concern about the potential psychological impact of genetic testing. We also found that some affected individuals may not fully comprehend the meaning of their potential test results. Eliciting patients' perceived pros and cons during genetic counseling is likely to be a valuable tool for improving patient care. This data also provides an improved evidence base for the development of patient education tools.

  View details for DOI 10.1089/gte.2007.0013

  View details for PubMedID 18294057