All Publications


  • Assessing the Needs of Adolescents and Young Adults Receiving Cancer Treatment: A Mixed Methods Study. Journal of adolescent and young adult oncology Simon, P. J., Pyke-Grimm, K. A., Nasr, A. S. 2022

    Abstract

    Purpose: This study was designed to assess the most salient health care needs of adolescents and young adults (AYAs) who undergo cancer treatment. Understanding their age-related needs helps providers offer appropriate support when support is vital: as they accept diagnosis and undergo treatment. Methods: A mixed methods design was used to obtain quantitative and qualitative data on the overall needs of AYA cancer patients. Participants, aged 16-29, who enrolled early in their cancer treatment, completed the Stanford Adolescent and Young Adult Cancer (SAYAC) Program survey and a subsequent one-on-one semistructured interview. Results: The quantitative and qualitative data were analyzed separately. The data revealed that AYAs adjusted and adapted to their cancer diagnosis to meet their health care needs. Three themes emerged from the data: acquisition of knowledge and experience, participation in decision-making and self-management behaviors, and gaining perspectives on life inside and outside of the hospital. The quantitative data revealed that the participants agreed or strongly agreed on the importance of being involved in the decision-making process, incorporating hopes and dreams into their treatment, and feeling supported by their family. Conclusion: Understanding the needs of AYAs who undergo cancer treatment is vital to their overall well-being. Using different data collection methods, including interviews, can clarify AYA needs and lead to improved individualized care.

    View details for DOI 10.1089/jayao.2021.0195

    View details for PubMedID 35575715

  • Implementation of a Pilot Clinic for Pediatric to Adult Cancer Survivorship Transitions. Journal of adolescent and young adult oncology Jin, A. H., Simon, P. J., Clayton, A., Benedict, C., Liedtke, M., Muffly, L., Schapira, L., Smith, S. M. 2023

    Abstract

    Childhood cancer survivors are recommended to have lifelong survivorship care, yet many become disengaged during pediatric to adult care transitions. We implemented a pilot clinic for adult survivors of pediatric or adolescent and young adult (AYA) leukemia transitioning to adult-focused survivorship care. The clinic featured AYA-specific care, bidirectional communication with primary care, and a quality improvement (QI) cycle. During the 1-year QI period, 27 patients were seen and 21 completed postvisit interviews. The clinic was positively received by patients and primary care providers, showed promise for improving self-management and care coordination, and highlighted the need for novel approaches to connect survivors with primary care.

    View details for DOI 10.1089/jayao.2023.0041

    View details for PubMedID 37615593

  • Body mindsets are associated with pain and threat-related risk factors for pain in survivors of childhood cancer. The journal of pain Dowling, E. J., Simons, L. E., Crum, A. J., Spunt, S. L., Simon, P., Webster, S. N., Brown, M. R., Jhanji, S., Chilcot, J., Heathcote, L. C. 2023

    Abstract

    Pain is a common consequence of childhood cancer. While most research has examined biomedical predictors of post-cancer pain, biopsychosocial conceptualisations such as the Cancer Threat Interpretation (CTI) model hold promise for guiding comprehensive pain management strategies. Guided by the CTI model, this cross-sectional study evaluated correlates of post-cancer pain in childhood cancer survivors including threat-related risk factors (bodily threat monitoring, fear of cancer recurrence, help-seeking) and mindsets about the body. In the preceding three months, 21.8% of survivors reported chronic pain (>3 months) and 14.3% experienced pain most days. Greater bodily threat monitoring, more fear of cancer recurrence, and more help-seeking was associated with more pain. There was heterogeneity in the mindsets that survivors of childhood cancer hold about their bodies. Holding the mindset that the 'body is an adversary' was associated with more pain, greater bodily threat monitoring and more fear of cancer recurrence. Holding the mindset that the 'body is responsive' was associated with less bodily threat monitoring, while the mindset that the 'body is capable' was associated with greater help-seeking. A path model demonstrated a significant combined indirect effect of the 'body is an adversary' mindset on pain through bodily threat monitoring and fear of cancer recurrence. Overall, this study supported that a sub-group of childhood cancer survivors experience persistent and interfering pain and provided cross-sectional support for threat-related correlates for pain aligning with the CTI model. Body mindsets were associated with pain and threat-related correlates and may represent a novel target to support survivors with pain.

    View details for DOI 10.1016/j.jpain.2023.07.030

    View details for PubMedID 37549774

  • "You don't accept he's completely ok": a reflexive thematic analysis of parents' roles in monitoring their child's health and symptoms after finishing childhood cancer treatment. Journal of cancer survivorship : research and practice Loecher, N., Jordan, A., Spunt, S. L., Simon, P., Simons, L. E., Dahl, G., Kosyluk, K., Heathcote, L. C. 2023

    Abstract

    OBJECTIVES/PURPOSE: Childhood cancer survival brings continued mental and physical health challenges both for the child and for the family. In this study, we investigated how parents viewed their roles in their child's health and symptom monitoring during the survivorship period.METHODS: Twenty-one parents of childhood cancer survivors (n=18 mothers; parent mage=49.78years, child mage=18.50years; range=12-25years), whose children were at least one year off-treatment (m=3.67years; SD=2.25; various diagnoses), completed semi-structured interviews. Interviews were recorded, transcribed, and analyzed using reflexive thematic analysis.RESULTS: Analyses generated three themes which reflect roles that parents may adopt in the context of monitoring symptoms in their childhood cancer survivor. "Vigilant Mama and Papa" (theme 1) described parents who expressed a strong sense of responsibility for protecting their child's health during survivorship resulting in careful monitoring of their child's symptoms and health. "Pragmatic Mamas and Papas" (theme 2) described parents who adopted an approach to symptom and health monitoring that emphasized moving past cancer and focusing on the future. Finally, "Encouraging Mamas and Papas" (theme 3) described parents who focused on educating and preparing their child to develop an autonomous approach to health and symptom self-monitoring as they transitioned to survivorship and adulthood.CONCLUSION: Parents take on varying roles in monitoring their child's symptoms and health after finishing childhood cancer treatment.IMPLICATIONS FOR CANCER SURVIVORS: Understanding the ways in which parents continue to be involved in their child's cancer journey helps researchers develop interventions to support dyadic coping in survivorship.

    View details for DOI 10.1007/s11764-023-01353-w

    View details for PubMedID 36821041

  • Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing. JMIR cancer Benedict, C., Dauber-Decker, K. L., Ford, J. S., King, D., Spiegel, D., Schapira, L., Simon, P., Diefenbach, M. 2022; 8 (2): e33304

    Abstract

    Owing to gonadotoxic cancer treatments, young adult female survivors often report uncertainty about their fertility, reproductive potential, and family-building options after treatment. Roadmap to Parenthood is a web-based decision aid and planning tool for family building after cancer.As part of a patient-centered development process, this study evaluated the usability of the decision aid website to inform design modifications and improve user experience.In total, 2 rounds of usability testing were conducted with the target population of young adult female cancer survivors. During the testing sessions, participants viewed the website twice; first, as a think-aloud exercise, and second, while a researcher interrupted at key points to obtain user feedback. Quantitative and qualitative data were collected to assess website usability. Quantitative measures included the System Usability Scale, WebQual, and eHealth Impact Questionnaire. An exit interview with open-ended questions gathered feedback on likes and dislikes and suggestions for improvement.Participants (N=10) were young adult women, with average age of 30.9 (SD 4.51) years, and average time since treatment was 4.44 (SD 3.56) years. Website usability scores improved on the System Usability Scale from "acceptable" in round 1 to "excellent" in round 2 after making design changes based on user feedback (scores of 68 and 89.4, respectively). WebQual scores showed similar improvement from round 1 to round 2 of testing (mean 5.6 to 6.25; range 1-7). On the eHealth Impact Questionnaire, the information and presentation of the website was perceived as comprehensive, easy to understand, and trustworthy. Participants also reported improved confidence to discuss and manage fertility and family-building issues and felt encouraged to play a more active role in managing their fertility. In all, 3 usability themes were identified from the qualitative feedback: ease of use, visibility and navigation, and informational content and usefulness. Overall feedback was positive, and participants reported intentions to use the decision aid website in the future. In total, 10% (1/10) of the participants reported negative emotions when learning about infertility risks and potential family-building challenges.Website usability improved after design changes were made in response to user feedback. Young adult female survivors reported positive views about the website and indicated that the decision aid would be useful in decision-making about family building after cancer. Future studies will include further design modifications to consider the emotional experiences of users and any additional navigational features or content to optimize the ease of use and support provided by the tool.

    View details for DOI 10.2196/33304

    View details for PubMedID 35639461

  • Smartphone-Based Ecological Momentary Assessment to Study "Scanxiety" among Adolescent and Young Adult Survivors of Childhood Cancer: A Feasibility Study. Psycho-oncology Heathcote, L. C., Cunningham, S. J., Webster, S. N., Tanna, V., Mattke, E., Loecher, N., Spunt, S. L., Simon, P., Dahl, G., Walentynowicz, M., Murnane, E., Tutelman, P. R., Schapira, L., Simons, L. E., Mueller, C. 2022

    Abstract

    OBJECTIVE: Scan-related anxiety ("scanxiety") refers to the fear, stress, and anxiety in anticipation of tests and scans in follow-up cancer care. This study assessed the feasibility of Ecological Momentary Assessment (EMA) for real-world, real-time capture of scanxiety using patients' personal smartphone.METHODS: Adolescent and Young Adult (AYA) survivors of childhood cancer were prompted to complete EMA surveys on a smartphone app three times per day for 11 days (33 surveys total) around their routine surveillance scans. Participants provided structured feedback on the EMA protocol.RESULTS: Thirty out of 46 contacted survivors (65%) enrolled, exceeding the preregistered feasibility cutoff of 55%. The survey completion rate (83%) greatly exceeded the preregistered feasibility cutoff of 65%. Participants generally found the smartphone app easy and enjoyable to use and reported low levels of distress from answering surveys. Participants reported significantly more daily fear of cancer recurrence (FCR) and negative affect in the days before compared to the days after surveillance scans, aligning with the expected trajectory of scanxiety. Participants who reported greater FCR and scanxiety using comprehensive measures at baseline also reported significantly more daily FCR around their surveillance scans, indicating validity of EMA items. Bodily threat monitoring was prospectively and concurrently associated with daily FCR, thus warranting further investigation as a risk factor for scanxiety.CONCLUSIONS: Findings indicate the feasibility, acceptability, and validity of EMA as a research tool to capture the dynamics and potential risk factors for scanxiety. This article is protected by copyright. All rights reserved.

    View details for DOI 10.1002/pon.5935

    View details for PubMedID 35411626

  • Pain and Intolerance of Uncertainty among Adolescent and Young Adult Cancer Survivors Tanna, V., Cunningham, S. J., Simon, P., Spunt, S. L., Schapira, L., Simons, L. E., Heathcote, L. C. CHURCHILL LIVINGSTONE. 2021: 611
  • Symptom appraisal in uncertainty: a theory-driven thematic analysis with survivors of childhood cancer. Psychology & health Heathcote, L. C., Loecher, N., Simon, P., Spunt, S. L., Jordan, A., Tutelman, P. R., Cunningham, S., Schapira, L., Simons, L. E. 2020: 1–18

    Abstract

    OBJECTIVE: Somatic symptoms capture attention, demand interpretation, and promote health behaviors. Symptom appraisal is particularly impactful within uncertain health contexts such as cancer survivorship. Yet, little is known about how individuals make sense of somatic symptoms within uncertain health contexts, nor how this process guides health behaviors.DESIGN: 25 adolescent and young adult survivors of childhood cancer completed semi-structured interviews regarding how they appraise and respond to changing somatic sensations within the uncertain context of survivorship.MAIN OUTCOME MEASURES: Interviews were transcribed verbatim and subjected to a hybrid deductive-inductive thematic analysis, guided by the Cancer Threat Interpretation model.RESULTS: We constructed three themes. Symptoms as signals of bodily threat (theme 1) captured that participants described commonly interpreting and worrying about everyday sensations as indicating cancer recurrence or new illness. Playing detective with bodily signals (theme 2) captured participants' felt need to employ cognitive and behavioral strategies to determine whether somatic sensations indicated a credible health threat. These two themes are qualified by the final theme, Living with symptom-related uncertainty (theme 3), which captured participants' recognition that post-cancer symptoms are wily and influenced by psychological factors such as anxiety.CONCLUSIONS: These data highlight that making sense of everday somatic sensations can be particularly challenging following an experience of cancer. There is a need for novel symptom management approaches that target how somatic sensations are appraised and responded to as signals of bodily threat.

    View details for DOI 10.1080/08870446.2020.1836180

    View details for PubMedID 33073604

  • Male and Female Sexual Dysfunction in Pediatric Cancer Survivors. The journal of sexual medicine Greenberg, D. R., Khandwala, Y. S., Bhambhvani, H. P., Simon, P. J., Eisenberg, M. L. 2020

    Abstract

    BACKGROUND: Pediatric cancer survivors suffer indirect long-term effects of their disease; however, there is a paucity of data regarding the effect of pediatric cancer survivorship on sexual function.AIM: To assess the prevalence and risk factors associated with sexual dysfunction among pediatric cancer survivors.METHODS: Pediatric cancer survivors were recruited to complete an online survey using the Female Sexual Function Index (FSFI) or the International Index of Erectile Function (IIEF-5), both validated questionnaires to assess female sexual dysfunction (FSD) and erectile dysfunction (ED). Patient demographics, oncologic history, prior treatment, and sexual habits were also queried. Logistic regression was used to evaluate risk factors for sexual dysfunction, and Mann-Whitney U test was used to identify factors associated with individual domains of the FSFI.OUTCOMES: The main outcome measures were FSFI and IIEF-5 score, which are used to diagnose FSD (FSFI<26.55) and ED (IIEF-5<22).RESULTS: A total of 21 (72.4%) female respondents and 20 (71.4%) male respondents were sexually active and completed the survey and FSFI or IIEF-5 questionnaire, respectively. Mean (±SD) age was 23.7 (4.1) years, andaverage age at diagnosis was 9.1 (5.0), with no difference between genders. Overall, 25.0% (5/20) of male and 52.4% (11/21) of female pediatric cancer survivors reported sexual dysfunction (P=.11). Oncologic history and prior treatment were not associated with sexual function. Females who reported difficulty relaxing during intercourse in the last 6months had higher odds of reporting sexual dysfunction (odds ratio: 13.6, 95% confidence interval: 1.2-151.2, P=.03). Subgroup analysis of FSFI domains found that previous radiation therapy was correlated with decreased lubrication and satisfaction during intercourse, whereas previous treatment to the pelvic region significantly reduced satisfaction and increased pain during intercourse.CLINICAL IMPLICATIONS: Female pediatric cancer survivors have higher odds of reporting sexual dysfunction after treatment and should be screened appropriately to provide early intervention and to mitigate risk.STRENGTH & LIMITATIONS: Our study includes validated questionnaires to assess FSD and ED and queries specific characteristics to assess their association with sexual dysfunction. However, the study is limited by sample size and its cross-sectional survey design.CONCLUSIONS: The prevalence of female sexual dysfunction in this cohort is higher than that in the general population of equivalent-aged individuals, and clinicians should be aware of these potential long-term sequelae. Greenberg DR, Khandwala YS, Bhambhvani HP, et-al. Male and Female Sexual Dysfunction in Pediatric Cancer Survivors. J Sex Med;XX:XXX-XXX.

    View details for DOI 10.1016/j.jsxm.2020.05.014

    View details for PubMedID 32622765

  • Survivorship for adolescents and young adults Simon, P. WILEY. 2020: 18–19
  • 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

  • Symptom monitoring and the uncertain threat of disease recurrence: A deductive thematic analysis with adolescent and young adult (AYA) cancer survivors. Heathcote, L. C., Loecher, N., Spunt, S. L., Simon, P., Dahl, G., Moiceanu, S., Cruanes, G., Tutelman, P., Schapira, L., Mueller, C., Chiu, B., Simons, L. AMER SOC CLINICAL ONCOLOGY. 2019
  • Pilot Use of Selected Measures from the Patient-Reported Outcomes Measurement Information System Social and Mental Health Domains with Young Adult Cancer Patients During the Transition to Survivorship Care. Journal of adolescent and young adult oncology Walsh, C., Jang, Y., Currin-McCulloch, J., Simon, P., Cubbin, C., Jones, B. 2019

    Abstract

    Social reintegration is an important part of young adult cancer patients' transition to survivorship care. As part of a mixed methods study exploring the social functioning of young adult cancer patients during this transition process, participants (N=13) completed four selected measures from the Patient-Reported Outcomes Measurement Information System (PROMIS) social and mental health domains within 6 months of completion of active treatment and 3 months later. The majority of participants (n=10) had T-scores within normal limits on all measures. Three participants had T-scores in the mild or moderate impairment range across time points. No significant differences were found between groups at Time 1 and Time 2 on any of the four measures.

    View details for DOI 10.1089/jayao.2019.0022

    View details for PubMedID 31242051

  • Family-building decision aid and planning tool for young adult women after cancer treatment: protocol for preliminary testing of a web-based decision support intervention in a single-arm pilot study. BMJ open Benedict, C. n., Ford, J. S., Schapira, L. n., Simon, P. n., Spiegel, D. n., Diefenbach, M. n. 2019; 9 (12): e033630

    Abstract

    Many young adult female (YA-F) cancer survivors who received gonadotoxic therapy will experience fertility problems. After cancer, having a child will often require assisted reproductive technology (ART), surrogacy or adoption. However, there are significant informational, psychosocial, financial and logistical barriers to pursuing these options. Survivors report high rates of decision uncertainty and distress related to family-building decisions. The aim of this study is to pilot test a web-based decision aid and planning tool for family-building after cancer.The pilot study will use a single-arm trial design to test the feasibility and acceptability (aim 1) and obtain effect size estimates of the decision support intervention (aim 2). The target sample size is 100. Participants will include YA-F survivors (aged 18-45 years) who are post-treatment and have not completed desired family-building. A longitudinal prepost design will be conducted. Participants will complete three psychosocial assessment surveys over a 3-month time period to track decisional conflict (primary outcome) and cognitive, emotional, and behavioural functioning (secondary outcomes). After completing the baseline survey (T1; pre-intervention), participants will have access to the decision aid website. Postintervention surveys will be administered at 1-month (T2) and 3-month (T3) follow-up time points. Feasibility and acceptability metrics will be analysed. Pairwise t-tests will test mean scores of outcome variables from T1 to T2. Effect size estimates (Cohen's d) will be calculated. Google analytics will evaluate user engagement with the website over the study period. Baseline and follow-up data will examine measures of feasibility, acceptability and intervention effect size.This will be the first test of a supportive intervention to guide YA-F cancer survivors in family-building decisions and early planning. Study findings will inform intervention development. Future directions will include a randomised controlled trial to test intervention efficacy over a longer time period.NCT04059237; Pre-results.

    View details for DOI 10.1136/bmjopen-2019-033630

    View details for PubMedID 31888941

  • Shifting Needs and Preferences: Supporting Young Adult Cancer Patients During the Transition from Active Treatment to Survivorship Care JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY Walsh, C., Currin-McCulloch, J., Simon, P., Zebrack, B., Jones, B. 2019; 8 (2): 114–21
  • Shifting Needs and Preferences: Supporting Young Adult Cancer Patients During the Transition from Active Treatment to Survivorship Care. Journal of adolescent and young adult oncology Walsh, C., Currin-McCulloch, J., Simon, P., Zebrack, B., Jones, B. 2018

    Abstract

    PURPOSE: This study was designed to identify and explore the social support needs and preferences of young adult cancer patients during the transition process from active treatment to survivorship care.METHODS: Semi-structured qualitative interviews were conducted with study participants (n=13, ages 17-25 at the time of cancer diagnosis) within 6 months of completion of active treatment and again 3 months later. Participants completed a sociodemographic questionnaire at the first study visit. Applied thematic analysis was used to identify themes from participant interviews.RESULTS: Six key themes and 12 subthemes emerged regarding participant interactions with their support system ("Being there," "Staying strong," and "Treat me the same") and health care team ("Connection and relationship building" and "Seeking knowledge and engaging in advocacy"), as well as treatment effects ("Uncertainty, Loss, & Changes in Identity" and "Ups & Downs of Physical Symptoms"), coping strategies ("Keep busy" and "Keep a positive vibe"), support resources ("Support needs change over time"), and post-treatment experiences ("Trying new things to cope with losses" and "Managing expectations with realities").CONCLUSION: Study findings suggest that supportive care needs can change during the transition process from active treatment to survivorship care. Young adult life transitions, such as finding employment and making new friendships, are more stressful when complicated by ongoing physical and psychological treatment effects. Social stressors and potential barriers to participation in supportive care services should be discussed openly with patients and caregivers, especially prior to transitions in care.

    View details for PubMedID 30312117

  • Effect of Fitbit and iPad Wearable Technology in Health-Related Quality of Life in Adolescent and Young Adult Cancer Patients. Journal of adolescent and young adult oncology Yurkiewicz, I. R., Simon, P., Liedtke, M., Dahl, G., Dunn, T. 2018

    Abstract

    PURPOSE: Adolescent and young adult (AYA) patients with cancer face significant challenges with regard to fatigue, reduced physical activity, and social isolation, which may negatively impact quality of life. This study investigated whether the use of digital wearable technology (Fitbits, along with synced iPads) can affect health-related quality of life (HRQOL) in AYA aged patients with cancer.MATERIALS AND METHODS: This was a prospective cohort study that offered Fitbits and iPads to all AYA patients aged 15 to 29 at an academic medical center at the time of cancer diagnosis. Patients completed the Short Form Health Survey developed by RAND (RAND-36) assessing eight dimensions of HRQOL on entering the study and at the time of their 6-month follow-up or the end of treatment, whichever occurred first. At the time of follow-up, patients also completed a questionnaire that assessed user experience, including frequency of wearable device use, enjoyment, challenges, and participation, in online communities.RESULTS: Thirty-three patients participated in the study. Most patients reported enjoying the digital technology and using the devices to track multiple aspects of their health (85%). Most also reported a subjective increase in physical activity (79%). After the intervention, participants demonstrated significant improvements across all eight dimensions of HRQOL measured by the RAND-36 (p<0.00 to 0.01).CONCLUSION: Distributing wearable technology at the time of diagnosis may provide an avenue for improving HRQOL in adolescents and young adults with cancer.

    View details for PubMedID 29924668

  • Effect of Fitbit and iPad Wearable Technology in Health-Related Quality of Life in Adolescent and Young Adult Cancer Patients JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY Yurkiewicz, I. R., Simon, P., Liedtke, M., Dahl, G., Dunn, T. 2018; 7 (5): 579–83