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  • Where do we start? Health care transition in adolescents and young adults with chronic primary pain. Pain Feinstein, A. B., Brown, K., Dunn, A. L., Neville, A. J., Sokol, O., Poupore-King, H., Sturgeon, J. A., Kwon, A. H., Griffin, A. T. 2024

    View details for DOI 10.1097/j.pain.0000000000003324

    View details for PubMedID 38981053

  • The association between parent mental health and pediatric chronic pain: a systematic review and meta-analysis. Pain Beveridge, J. K., Noel, M., Soltani, S., Neville, A., Orr, S. L., Madigan, S., Birnie, K. A. 2023

    Abstract

    Mental health problems are common among parents of children with chronic pain and associated with worse outcomes for the child with chronic pain. However, the effect sizes of these associations between parent mental health and pediatric chronic pain vary widely across studies. The aim of this systematic review and meta-analysis was to generate pooled estimates of the (1) prevalence of mental health problems among parents of children with chronic pain and (2) associations between parent mental health and the (2a) presence of child chronic pain and (2b) functioning of children with chronic pain. Embase, MEDLINE, PsycINFO, Web of Science, and CINAHL were searched up to November 2022. Observational studies that examined symptoms or diagnoses of parent anxiety, depression, or general distress and the presence of child chronic pain and/or related functioning were included. From 32,848 records, 2 coders identified 49 studies to include in random-effects meta-analyses. The results revealed that mental health problems among parents of children with chronic pain were common (anxiety: 28.8% [95% CI 20.3-39.1]; depression: 20.0% [15.7-25.2]; general distress: 32.4% [22.7-44.0]). Poorer parent mental health was significantly associated with the presence of chronic pain (anxiety: OR = 1.91 [1.51-2.41]; depression: OR = 1.90 [1.51-2.38]; general distress: OR = 1.74 [1.47-2.05]) and worse related functioning (ie, pain intensity, physical functioning, anxiety and depression symptoms; rs = 0.10-0.25, all Ps < 0.05) in children. Moderator analyses were generally nonsignificant or could not be conducted because of insufficient data. Findings support the importance of addressing parent mental health in the prevention and treatment of pediatric chronic pain.

    View details for DOI 10.1097/j.pain.0000000000003125

    View details for PubMedID 38112571

  • Commentary: Peer Support Needs of Adolescents With Chronic Pain. Journal of pediatric psychology Choate, E. S., Neville, A. J., Simons, L. E. 2023

    View details for DOI 10.1093/jpepsy/jsad027

    View details for PubMedID 37155915

  • A longitudinal examination of parent diagnostic uncertainty in pediatric chronic pain Neville, A., Biggs, E., Tremblay-McGaw, A., Miner, A., Coghill, R., King, C., Lopez-Sola, M., Moayedi, M., Gaudilliere, B., Aghaeepour, N., Angst, M., Stinson, J., Simons, L. E. OXFORD UNIV PRESS INC. 2023: 144-145
  • Pediatric transition into adult care: Exploring perceptions and needs of adolescents with chronic pain Sokol, O., Griffin, A., Brown, K., Dunn, A., Poupore-King, H., Kwon, A., Berger, A., Neville, A., Feinstein, A. OXFORD UNIV PRESS INC. 2023: 9-10
  • Pediatrician explanations of pediatric pain in clinical settings: A delicate craft. The journal of pain Jordan, A., Williams, M., Jones, A., Noel, M., Neville, A., Clinch, J., Pincus, T., Gauntlett-Gilbert, J., Leake, H. 2023

    Abstract

    Explaining chronic pain to children and families can be challenging, particularly in the absence of an obvious physiologically identifiable cause for the child's pain. In addition to medical intervention, children and families may expect clinicians to provide clarity around the cause of pain. Such explanations are often provided by clinicians who have not received formal pain training. This qualitative study sought to explore the following question: What do pediatricians consider to be important when providing pain explanations to children and their parents? Using semi-structured interview methods, sixteen UK pediatricians were interviewed regarding their perceptions of explaining chronic pain to children and families in clinical settings. Data were analysed using inductive reflexive thematic analysis. Analyses generated three themes: 1) timing of the explanation, 2) casting a wider net, and 3) tailoring of the narrative. Study findings demonstrated the need for pediatricians to skilfully interpret where children and families are in their pain journey and deliver an appropriate and adaptable explanation relating to individual needs. Analyses identified the importance of providing a pain explanation that could be repeated and understood by others outside the consultation room, to enable children and families to accept the explanation.

    View details for DOI 10.1016/j.jpain.2023.03.002

    View details for PubMedID 36893876

  • Experiences of medical traumatic stress in parents of children with medical complexity CHILD CARE HEALTH AND DEVELOPMENT Dewan, T., Birnie, K., Drury, J., Jordan, I., Miller, M., Neville, A., Noel, M., Randhawa, A., Zadunayski, A., Zwicker, J. 2023; 49 (2): 292-303

    Abstract

    Parents of children with medical complexity (CMC) experience high levels of stress and adverse mental health outcomes. Pediatric medical traumatic stress (PMTS) could be an important contributor that has not yet been explored. PMTS describes parents' reactions to their child's illness and medical treatment and can lead to post-traumatic stress symptoms. This is the first study to describe the experiences and impact of PMTS among parents of CMC.We conducted semi-structured interviews with 22 parents of CMC. Reflexive thematic analysis was used to generate themes that described the experiences of PMTS and potential contributing factors in the healthcare setting. Themes were validated by study participants.Parents experienced a spectrum of events and circumstances that impacted PMTS. These corresponded to three major themes: (a) the distinctive context of being the parent of a CMC, (b) interactions with healthcare providers that can hurt or heal and (c) system factors that set the stage for trauma. The consequences of repeated PMTS were a common point of emphasis among all the themes. Parents identified numerous changes that could mitigate PMTS such as acknowledgement of trauma and provision of proactive mental health support.Our study highlights the issue of PMTS among parents of CMC and presents opportunities to mitigate their traumatic experiences. Supporting the integration of trauma-informed care practices, increasing awareness of PMTS and advocating for parental mental health services could better support parents and families.

    View details for DOI 10.1111/cch.13042

    View details for Web of Science ID 000847125100001

    View details for PubMedID 35947493

    View details for PubMedCentralID PMC10087969

  • Pediatric Chronic Pain in the Midst of the COVID-19 Pandemic: Lived Experiences of Youth and Parents JOURNAL OF PAIN Neville, A., Lund, T., Soltani, S., Jordan, A., Stinson, J., Killackey, T., Birnie, K. A., Noel, M. 2022; 23 (5): 841-851

    Abstract

    During the coronavirus 2019 (COVID-19) pandemic youth with chronic pain have experienced additional barriers to accessing treatment and managing their pain. This study explored the experiences of youth with chronic pain and their parents during the COVID-19 pandemic. Individual semi-structured interviews were conducted with 20 youth with chronic pain (aged 13-20 years) and one of their parents, recruited from a tertiary level pediatric chronic pain program. Interviews occurred between the months of June to August 2020 and enabled participants to describe their experiences of the COVID-19 pandemic according to their own unique perspectives. Transcripts were analyzed using inductive reflexive thematic analysis. Four themes were generated and labelled: "temporality, mental health, and pain," "coping with pain during a global pandemic," "impact on care," and "re-appraisal in the context of development and pandemic life." Across these themes, youth and parents described their unique challenges of living with pain as they adapted to changing circumstances of the COVID-19 pandemic. Notably, youth experienced increased difficulties managing their mental health and pain, which were intricately connected and related to social isolation, temporality, and uncertainty exacerbated by the COVID-19 pandemic. Restrictions due to the COVID-19 pandemic impacted youth's access to care and their abilities to engage in coping strategies to manage their pain. The COVID-19 pandemic was also perceived to have interrupted youth's development and growing autonomy, prompting youth to re-appraise their current circumstances and imagined futures. PERSPECTIVE: This manuscript provides an in-depth understanding of the impact of the COVID-19 pandemic on youth with chronic pain and their parents. Youth and their parents perceived the COVID-19 pandemic to have impacted youth's mental health, pain, socio-emotional development, and access to care.

    View details for DOI 10.1016/j.jpain.2021.11.012

    View details for Web of Science ID 000831490200010

    View details for PubMedID 34915200

    View details for PubMedCentralID PMC8710941

  • Rapid Evidence and Gap Map of virtual care solutions across a stepped care continuum for youth with chronic pain and their families in response to the COVID-19 pandemic PAIN Birnie, K. A., Pavlova, M., Neville, A., Noel, M., Jordan, I., Jordan, E., Marianayagam, J., Stinson, J., Lorenzetti, D. L., Faulkner, V., Killackey, T., Campbell, F., Lalloo, C. 2021; 162 (11): 2658-2668

    Abstract

    Poor access to pediatric chronic pain care is a longstanding concern. The COVID-19 pandemic has necessitated virtual care delivery at an unprecedented pace and scale. We conducted a scoping review to create an interactive Evidence and Gap Map of virtual care solutions across a stepped care continuum (ie, from self-directed to specialist care) for youth with chronic pain and their families. Review methodology was codesigned with 8 youth with chronic pain and 7 parents/caregivers. Data sources included peer-reviewed scientific literature, gray literature (app stores and web sites), and a call for innovations. Records were independently coded and assessed for quality. Overall, 185 records were included (105 scientific records, 56 apps, 16 web sites, and 8 innovations). Most virtual care solutions were applicable across pediatric chronic pain diagnoses, with the greatest proportion at lower levels of stepped care (ie, >100 self-guided apps and web sites). Virtual delivery of psychological strategies was common. Evidence gaps were noted at higher levels of stepped care (ie, requiring more resource and health professional involvement), integration with health records, communication with health professionals, web accessibility, and content addressing social/family support, medications, school, substance use, sleep, diet, and acute pain flares or crises. Evidence and Gap Maps are a novel visual knowledge synthesis tool, which enable rapid evidence-informed decision-making by patients and families, health professionals, and policymakers. This evidence and gap map identified high-quality virtual care solutions for immediate scale and spread and areas with no evidence in need of prioritization. Virtual care should address priorities identified by youth with chronic pain and their families.

    View details for DOI 10.1097/j.pain.0000000000002339

    View details for Web of Science ID 000707417300007

    View details for PubMedID 34050111

    View details for PubMedCentralID PMC8516804

  • Best practices for virtual care to support youth with chronic pain and their families: a rapid systematic review to inform health care and policy during COVID-19 and beyond PAIN REPORTS Birnie, K. A., Killackey, T., Stinson, J., Noel, M., Lorenzetti, D. L., Marianayagam, J., Jordan, I., Jordan, E., Neville, A., Pavlova, M., Campbell, F., Lalloo, C. 2021; 6 (2): e935

    Abstract

    The COVID-19 pandemic has acutely challenged health systems and catalyzed the need for widescale virtual care and digital solutions across all areas of health, including pediatric chronic pain. The objective of this rapid systematic review was to identify recommendations, guidelines, and/or best practices for using virtual care to support youth with chronic pain and their families (CRD42020184498). MEDLINE, CINAHL, Embase, APA PsychINFO, and Web of Science were searched the week of May 25, 2020, for English language peer-reviewed articles published since 2010 that (1) discussed children and adolescents aged <18 years reporting any type of chronic pain (ie, pain lasting >3 months); (2) focused on any type of virtual care (eg, telephone, telehealth, telemedicine, mHealth, eHealth, online, or digital); and (3) reported on guidelines, best practices, considerations, or recommendations for virtual care. Abstract and full text screening and data extraction were performed in duplicate. Meta-ethnography was used to synthesize concepts across articles. Of 4161 unique records screened, 16 were included addressing diverse virtual care and pediatric chronic pain conditions. Four key themes were identified: (1) opportunities to better leverage virtual care, (2) direct effective implementation of virtual care, (3) selection of virtual care platforms, and (4) gaps in need of further consideration when using virtual care to support youth with chronic pain and their families. No existing guidelines for virtual care for pediatric chronic pain were identified; however, best practices for virtual care were identified and should be used by health professionals, decision makers, and policymakers in implementing virtual care.

    View details for DOI 10.1097/PR9.0000000000000935

    View details for Web of Science ID 000711826100002

    View details for PubMedID 34104841

    View details for PubMedCentralID PMC8177877

  • A longitudinal examination of the interpersonal fear avoidance model of pain: the role of intolerance of uncertainty PAIN Neville, A., Kopala-Sibley, D. C., Soltani, S., Asmundson, G. G., Jordan, A., Carleton, R., Yeates, K., Schulte, F., Noel, M. 2021; 162 (1): 152-160

    Abstract

    Youth with chronic pain and their parents face uncertainty regarding their diagnosis, treatment, and prognosis. Given the uncertain nature of chronic pain and high comorbidity of anxiety among youth, intolerance of uncertainty (IU) may be critical to the experience of pediatric chronic pain. This study longitudinally examined major tenets of the Interpersonal Fear Avoidance Model of Pain and included parent and youth IU as key factors in the model. Participants included 152 youth with chronic pain (Mage = 14.23 years; 72% female) and their parents (93% female). At baseline, parents and youth reported on their IU and catastrophic thinking about youth pain; youth reported on their fear of pain, pain intensity, and pain interference; and parents reported on their protective responses to child pain. Youth reported on their pain interference 3 months later. Cross-lagged panel models, controlling for baseline pain interference, showed that greater parent IU predicted greater parent pain catastrophizing, which, in turn, predicted greater parent protectiveness, greater youth fear of pain, and subsequently greater youth 3-month pain interference. Youth IU had a significant indirect effect on 3-month pain interference through youth pain catastrophizing and fear of pain. The results suggest that parent and youth IU contribute to increases in youth pain interference over time through increased pain catastrophizing, parent protectiveness, and youth fear of pain. Thus, parent and youth IU play important roles as risk factors in the maintenance of pediatric chronic pain over time and may be important targets for intervention.

    View details for DOI 10.1097/j.pain.0000000000002009

    View details for Web of Science ID 000607336300013

    View details for PubMedID 32701651

  • 'Drawing a line in the sand': Physician diagnostic uncertainty in paediatric chronic pain EUROPEAN JOURNAL OF PAIN Neville, A., Noel, M., Clinch, J., Pincus, T., Jordan, A. 2021; 25 (2): 430-441

    Abstract

    Diagnostic uncertainty is the subjective perception of an inability to provide an accurate explanation of the patient's health problem or that a label is missing or incorrect. While recently explored in youth with chronic pain and families, this is the first study to investigate diagnostic uncertainty from the perspectives of physicians.Individual, semi-structured interviews were conducted with 16 paediatricians who assess and/or treat youth who experience complex chronic pain. Interviews explored paediatricians' perceptions, beliefs and confidence regarding the assessment and management of chronic pain in youth and how they manage uncertainty regarding the diagnosis. Interviews were analysed using inductive reflexive thematic analysis.Analyses generated one prominent theme: 'drawing a line in the sand'. Within this theme, physicians discussed uncertainty as inherent to their role treating youth with chronic pain. The metaphor of 'drawing a line in the sand' was used to describe a process of identifying a point at which physicians no longer sought a new diagnosis for the child's pain or continued diagnostic investigations. This line was influenced by numerous factors, which are highlighted through four subthemes: physician training, experience and mentorship; individual patient and family factors; perceived reassurance of diagnostic investigations; and the broader social context and implications.How physicians manage diagnostic uncertainty must be understood, as it is likely to critically impact how a diagnosis of chronic pain is communicated, the diagnostic investigations undertaken, the wait time to receiving a diagnosis, and ultimately youths' pain experiences.

    View details for DOI 10.1002/ejp.1682

    View details for Web of Science ID 000584258000001

    View details for PubMedID 33064862

  • Diagnostic uncertainty in pediatric chronic pain: nature, prevalence, and consequences PAIN REPORTS Neville, A., Jordan, A., Pincus, T., Nania, C., Schulte, F., Yeates, K., Noel, M. 2020; 5 (6): e871

    Abstract

    Diagnostic uncertainty (DU), which is the perception that a label or explanation for a patient's health problem is missing or inaccurate, has been linked to distress, anxiety, and difficulty coping among adults with pain. This study examined the prevalence of DU among youth with chronic pain and their parents and the relation of parent and youth DU with youth pain, pain-related constructs, and health-related quality of life (HRQoL).Participants included 174 youth with chronic pain (M age = 14.28 years; 73% female) and one of their parents (91% mothers) recruited from a tertiary-level pediatric chronic pain program in Canada. Youth and parent DU was assessed using a brief measure of 3 empirically derived yes/no questions regarding whether the youth and parent had received a clear diagnosis/explanation for their/their child's pain and whether they believed there was something else happening with their/their child's pain that doctors had not yet found. Youth reported on their pain intensity, pain interference, pain catastrophizing, fear of pain, and HRQoL.Thirty-one percent of youth and 28% of parents experienced DU. Seventy percent of parents and youth were in agreement regarding their experience of DU. Youth DU was linked to higher youth catastrophic thinking about their pain. Parent DU was linked to greater youth pain interference and intensity and lower youth HRQoL.Diagnostic uncertainty is experienced by nearly a third of youth with chronic pain and their parents and is linked to worse youth pain, pain catastrophizing, and HRQoL.

    View details for DOI 10.1097/PR9.0000000000000871

    View details for Web of Science ID 000672819900013

    View details for PubMedID 33251472

    View details for PubMedCentralID PMC7690765

  • Pain in long-term survivors of childhood cancer: A systematic review of the current state of knowledge and a call to action from the Children's Oncology Group. Cancer Schulte, F. S., Patton, M., Alberts, N. M., Kunin-Batson, A., Olson-Bullis, B. A., Forbes, C., Russell, K. B., Neville, A., Heathcote, L. C., Karlson, C. W., Racine, N. M., Charnock, C., Hocking, M. C., Banerjee, P., Tutelman, P. R., Noel, M., Krull, K. R. 2020

    Abstract

    Survivors of childhood cancer may be at risk of experiencing pain, and a systematic review would advance our understanding of pain in this population. The objective of this study was to describe: 1) the prevalence of pain in survivors of childhood cancer, 2) methods of pain measurement, 3) associations between pain and biopsychosocial factors, and 4) recommendations for future research. Data sources for the study were articles published from January 1990 to August 2019 identified in the PubMed, PsycINFO, EMBASE, and Web of Science data bases. Eligible studies included: 1) original research, 2) quantitative assessments of pain, 3) articles published in English, 4) cancers diagnosed between birth and age 21 years, 5) survivors at 5 years from diagnosis and/or at 2 years after therapy completion, and 6) a sample size >20. Seventy-three articles were included in the final review. Risk of bias was considered using the Cochrane risk of bias tool. The quality of evidence was evaluated according to Grading of Recommendations Assessment Development and Evaluation (GRADE) criteria. Common measures of pain were items created by the authors for the purpose of the study (45.2%) or health-related quality-of-life/health status questionnaires (42.5%). Pain was present in from 4.3% to 75% of survivors across studies. Three studies investigated chronic pain according the definition in the International Classification of Diseases. The findings indicated that survivors of childhood cancer are at higher risk of experiencing pain compared with controls. Fatigue was consistently associated with pain, females reported more pain than males, and other factors related to pain will require stronger evidence. Theoretically grounded, multidimensional measurements of pain are absent from the literature.

    View details for DOI 10.1002/cncr.33289

    View details for PubMedID 33112416

  • A "dyadic dance": pain catastrophizing moderates the daily relationships between parent mood and protective responses and child chronic pain PAIN Neville, A., Griep, Y., Palermo, T. M., Vervoort, T., Schulte, F., Yeates, K., Sumpton, J. E., Mychasiuk, R., Noel, M. 2020; 161 (5): 1072-1082

    Abstract

    Children's experience of chronic pain is influenced by the psychological and behavioural responses of their parents. However, the majority of research has been cross-sectional, precluding examination of how these dynamic relationships unfold over time. This study used a microlongitudinal design to examine the daily relationships between parent mood and protective responses and child chronic pain. We also examined the moderating roles of child and parent pain catastrophizing to determine how the affective-motivational context may alter the influence of parent factors. Participants included 95 youth with idiopathic chronic pain (Mage = 14.08; 71.6% female) and their parents. At baseline, parents and youth reported on their catastrophic thinking about child pain. For 7 consecutive days, parents completed daily assessments of their mood and protective responses, while youth completed assessments of their pain intensity, unpleasantness, and interference. Multilevel path analyses were conducted. At a daily level, greater parent protectiveness significantly predicted higher youth pain unpleasantness, interference, and intensity; more negative parent mood significantly predicted higher youth pain intensity and unpleasantness. Higher baseline youth pain catastrophizing predicted a stronger daily association between parent mood and youth pain unpleasantness and intensity. Higher baseline parent pain catastrophizing predicted a weaker daily association between parent protectiveness and youth pain interference. Findings suggest that parent mood and protective responses are dynamic, daily predictors of child pain. Findings also underscore the importance of addressing parents' daily mental health and protectiveness, among youth with chronic pain, and suggest different intervention targets depending on levels of child and parent catastrophizing.

    View details for DOI 10.1097/j.pain.0000000000001799

    View details for Web of Science ID 000531374900022

    View details for PubMedID 31917776

  • Something Else Going On? Diagnostic Uncertainty in Children with Chronic Pain and Their Parents. Children (Basel, Switzerland) Tanna, V. n., Heathcote, L. C., Heirich, M. S., Rush, G. n., Neville, A. n., Noel, M. n., Pate, J. W., Simons, L. E. 2020; 7 (10)

    Abstract

    Diagnostic uncertainty, the perceived lack of an accurate explanation of the patient's health problem, remains relatively unstudied in children. This study examined the prevalence, familial concordance, and correlates of diagnostic uncertainty in children and their parents presenting to a multidisciplinary pain clinic in the United States. One hundred and twenty-six parents and 91 of their children (Mage = 13.93 years, range = 8-18 years) completed a brief three-item measure of diagnostic uncertainty, as well as measures of pain-related distress and functioning. Forty-eight percent of children and 37% of parents believed something else was going on with the child's pain that doctors had not found out about yet. Across the three items, 66%-77% of children and their parents agreed in their endorsement of diagnostic uncertainty. Parents who believed that something else was going on with their child's pain had children with higher avoidance of pain-related activities (F = 5.601, p = 0.020) and lower pain willingness (F = 4.782, p = 0.032). Neither parent nor child diagnostic uncertainty was significantly related to the child's pain-related functioning. Diagnostic uncertainty, particularly in parents, is relevant in the experience of pediatric chronic pain and warrants further investigation as both a risk factor and therapeutic target.

    View details for DOI 10.3390/children7100165

    View details for PubMedID 33020423

  • Diagnostic Uncertainty in Youth With Chronic Pain and Their Parents JOURNAL OF PAIN Neville, A., Jordan, A., Beveridge, J. K., Pincus, T., Noel, M. 2019; 20 (9): 1080-1090

    Abstract

    Diagnostic uncertainty-the perception of a lack of or incorrect label to explain symptoms-has been reported by parents of youth with chronic pain. This study was the first to examine diagnostic uncertainty in both youth with chronic pain and their parents using a qualitative methodology. Individual, face-to-face, semistructured interviews were conducted with 20 youth with chronic pain recruited from a pediatric chronic pain program. Independent interviews were also conducted with one of their parents. Interviews explored participants' memories and perceptions around diagnosis. An in-depth thematic analysis revealed 4 themes: (1) The function of a diagnosis-Parents and youth struggled with the meaning of the diagnosis, needed further explanation for the pain, and perceived the 'right' diagnosis (ie, one that fit with their beliefs) as justification for the pain. (2) Haunted by something missing-Negative test results did not provide relief or counter the belief that something serious could have been missed by clinicians. (3) The search for an alternative diagnosis-A search persisted for the 'right' diagnosis, particularly when a nonpharmacological treatment plan was provided. (4) Mistrust in the medical system-Clinician communication and perceptions of clinicians' uncertainty impacted parent and youth 'buy in' to the diagnosis. Findings suggest that many youth with chronic pain and their parents experience diagnostic uncertainty, which is integrally tied to their past experiences with the medical system. A greater understanding of diagnostic uncertainty may help tailor how clinicians deliver diagnoses to achieve buy in, increase understanding of pain and diagnosis, and improve treatment response. PERSPECTIVE: A major challenge that youth with chronic pain and their parents face is understanding the cause of the pain. Youth with chronic pain and their parents experience uncertainty about their diagnosis, which may be linked to their buy in and treatment response.

    View details for DOI 10.1016/j.jpain.2019.03.004

    View details for Web of Science ID 000486135900008

    View details for PubMedID 30904516