Exploring the role of pain on physical activity among youth with acute lymphoblastic leukemia using the biopsychosocial model.

BACKGROUND: Engaging in physical activity (PA) throughout cancer treatment offers many benefits, but may be challenging due to cancer-related pain. Pain research in pediatric cancer has primarily focused on procedural pain, with fewer studies exploring how pain affects PA. The current study qualitatively investigated the impact of pain on PA in youth with acute lymphoblastic leukemia (ALL) using a biopsychosocial framework. PROCEDURE: As part of a larger study, caregivers (N = 17) of a child diagnosed with ALL and on treatment for less than 1 year completed a semi-structured interview about perceptions of their child's health behaviors during ALL treatment. This secondary analysis focused specifically on discussions about pain and its impact on PA. We followed Braun and Clarke's (2006) six-step thematic analysis framework to identify themes of pain-related barriers to PA. RESULTS: Key pain-related barriers endorsed by caregivers included: interactions among pain and treatment effects, caregiver distress around seeing their child in pain, and fear of interfering with medical equipment. Despite these barriers, caregivers found creative solutions to adapt activities for their child. Caregivers were reassured by PA advice from their medical team; however, advice varied between teams. CONCLUSION: The relationship between pain and PA during ALL treatment is influenced by an intricate system of biological (e.g., treatment effects), psychological (e.g., parental distress), and social (e.g., communication among families and medical teams) factors. Future directions include identifying evidence-based PA recommendations and exploring family-team communication dynamics. This study also highlights a need to prioritize ALL pain management and involve caregivers in behavioral treatment protocols to improve PA.

Examining where to go: pediatric psychology trainees' perception of their graduate training in culture and diversity.

OBJECTIVE: Culture and diversity-related training is critical to the development of competent pediatric psychologists. Evaluation of training efforts have been conducted at the program level, yet evaluation of trainee experiences in culture and diversity-related training remains unassessed. This trainee-led study was the first formal assessment of pediatric psychology trainee experiences of culture and diversity-related training and the impact of training on their own cultural humility. METHODS: Study overview and a survey link was distributed across 2 listservs associated with the American Psychological Association (Division 53, Division 54) and sent directly to directors of graduate, internship, and fellowship training programs with a request to share with trainees. Surveys assessing integration of cultural training and trainee cultural humility were completed. Trainees also provided qualitative feedback regarding their multicultural training and development. RESULTS: Pediatric psychology trainees (N = 90) reported inconsistent integration of culture and diversity topics into their training. Of the 34 training areas assessed, 10 were perceived as thoroughly integrated into formal training by at least half of the respondents. Trainees often sought independent cultural training outside of their programs, and no relationship was detected between perceived integration of cultural training and trainee cultural competence. DISCUSSION: Results indicate room for improvement regarding integration of cultural training and a need to better understand driving forces behind trainees independently seeking training outside of their formal training programs. Moreover, understanding the aspects of training that are most contributory to trainee development is needed given that no relationship between training and development emerged in the current study.

Impact of preventive pill-based treatment on migraine days: A secondary outcome study of the Childhood and Adolescent Migraine Prevention (CHAMP) trial and a comparison of self-report to nosology-derived assessments.

OBJECTIVE: To examine group differences in self-reported migraine days among youth who completed the Childhood and Adolescent Migraine Prevention (CHAMP) trial prior to its closure and explore the relationship between self-reported and "nosology-derived" (i.e., International Classification of Headache Disorders, 3rd edition [ICHD-3]) migraine days. BACKGROUND: The CHAMP trial compared amitriptyline and topiramate to placebo for migraine prevention in youth and proposed to analyze change in migraine days as a secondary outcome. There is considerable variability in the field regarding what constitutes a "migraine day," how this is determined and reported in trials, and how consistent these measures are with diagnostic nosology. METHODS: CHAMP trial completers (N = 175) were randomized to receive amitriptyline (n = 77), topiramate (n = 63), or placebo (n = 35). Participants maintained daily headache diaries where they reported each day with headache and if they considered that headache to be a migraine. For each headache day, participants completed a symptom record and reported about symptoms such as pain location(s) and presence of nausea/vomiting or photophobia and phonophobia. We examined group differences in self-reported migraine days at trial completion (summed from trial weeks 20-24) compared to baseline. We also used an algorithm to determine whether participants' symptom reports met ICHD-3 criteria for migraine without aura, and examined the association between self-reported and "nosology-derived" migraine days. RESULTS: Results showed no significant differences between groups in self-reported migraine days over the course of the trial. Self-reported and "nosology-derived" migraine days during the baseline and treatment phases were strongly associated (r's = 0.73 and 0.83, respectively; p's < 0.001). CONCLUSION: Regardless of treatment, CHAMP trial completers showed clinically important reductions in self-reported migraine days over the course of the trial (about 3.8 days less). The strong association between self-reported and "nosology-derived" migraine days suggests youth with migraine can recognize a day with migraine and reliably report their headache features and symptoms. Greater rigor and transparency in the calculation and reporting of migraine days in trials is needed.

Digital headache self-management interventions for patients with a primary headache disorder: A systematic review of randomized controlled trials.

OBJECTIVE: This article systematically reviews the empirical literature examining the efficacy of digital headache management interventions for patients with a primary headache disorder. BACKGROUND: Digital headache management interventions provide opportunities to improve access to behavioral headache interventions to underserved groups. METHODS: A systematic search of PubMed, Scopus, and EBSCO (PsycInfo, Education Research Complete, ERIC, Health Source: Nursing/Academic Edition, Psychology and Behavioral Sciences Collection) and reference review was conducted. Included studies had to recruit a sample with a primary headache diagnosis, be a randomized controlled trial including a digital component, assess a headache outcome (i.e., frequency, duration, severity, intensity, disability) or quality of life, and be published in English. Two authors independently extracted data for included studies. The methodological quality of studies was assessed using the revised Cochrane risk-of-bias tool. RESULTS: Thirteen studies with unique interventions met inclusion criteria. More than half of the studies were pilots; however, nearly 70% (9/13) demonstrated significant between-group or within-group improvements on one or more headache-related outcomes. All interventions included some form of relaxation training and the majority were delivered via interactive website. While fewer than half the studies report participant race and/or ethnicity, of those that do, 83% (5/6) reported a predominately White/Caucasian sample. CONCLUSIONS: Efficacy testing of digital headache interventions is in its infancy with the majority of these studies relying on pilot studies with small samples comprised of homogenous patient populations. Interactive websites were the most common digital medium to deliver digital headache management interventions and have demonstrated promising results. Further testing using large-scale randomized controlled trials and exploration of other digital tools is warranted. Future studies with more diverse samples are needed to inform health equity of digital headache interventions.

Establishing the Content Validity of a Modified Bank of School Anxiety Inventory Items for Use Among Adolescents With Chronic Pain.

OBJECTIVE: School anxiety is a prevalent mental health concern that drives school-related disability among youth with chronic pain. The only available measure of school anxiety-the School Anxiety Inventory, Short Version (SAI-SV)-lacks content specificity for measuring school anxiety in pediatric pain populations. We aimed to refine the SAI-SV by obtaining qualitative data about unique school situations that are anxiety-provoking for youth with pain and characterizing the nature of symptoms experienced in these situations. METHODS: Adolescents with chronic pain (n = 16) completed a semistructured interview focused on experiences with anxiety in school-related academic and social contexts. We employed thematic analysis to extend the empirical understanding of school anxiety from the perspective of patients suffering from pain and to generate new item content. The content was refined with iterative feedback from a separate group of adolescents with chronic pain (n = 5) and a team of expert pain psychologists (n = 3). RESULTS: We identified six themes within the data and generated new items designed to capture anxiety related to negative interactions with teachers and peers, falling behind with schoolwork, and struggles with concentration and fatigue. Participants and experts rated new item content as highly relevant for use among youth with pain. The updated item bank was named the School Anxiety Inventory for Chronic Pain. CONCLUSIONS: Future research is needed to complete the psychometric evaluation of the item bank and finalize items to be included in a measure that can be used in research and clinical settings. Implications for treating school-related anxiety among youth with pain are also discussed.

Psychological Interventions for Pediatric Headache Disorders: A 2021 Update on Research Progress and Needs.

PURPOSE OF REVIEW: This review summarizes key findings from recent investigations of psychological interventions for pediatric headache disorders and discusses important avenues for future research. RECENT FINDINGS: Cognitive Behavioral Therapy (CBT) is effective in reducing headache days among youth with chronic headache. There is mixed evidence for the benefit of CBT on reducing disability associated with migraine, suggesting that there is room to optimize CBT by leveraging complementary or alternative psychological interventions, such as Acceptance and Commitment Therapy (ACT) and mindfulness-based approaches. Tailoring CBT may be especially important for youth with more impairing or complex clinical presentations, such as those with continuous headache. Using eHealth and novel study designs to expand access to and dissemination of psychological interventions is promising. Although CBT is the gold standard psychological treatment for youth with migraine, we are only beginning to understand how and why it is effective. Other promising psychological treatments are available, and studies are beginning to examine how CBT can be optimized to fit the unique needs of each patient. Improving access and equitability of care for youth with migraine will require tailoring psychological treatments for patients with varying headache presentations and youth from a variety of cultural, racial, ethnic, and linguistic backgrounds.

The role of pain catastrophizing in cyberchondria among emerging adults.

Chronic pain is a prevalent and debilitating health problem that often persists in the absence of an identifiable biomedical cause. Uncertainty regarding the origins of a pain problem may lead to pain catastrophizing and unfruitful healthcare seeking behaviors. Individuals with chronic pain often turn to the internet to identify possible causes or sources of their pain symptoms, thus affirming their pain experience. Despite evidence that pain catastrophizing amplifies distress about pain complaints, no studies have investigated whether it is associated with escalations in health anxiety that result from searching for online health information (i.e., cyberchondria). The aim of the present study was to investigate whether pain catastrophizing predicted variance in cyberchondria above and beyond health anxiety. Undergraduate students (N = 221, 70.6% female) completed questionnaires assessing pain catastrophizing, health anxiety, and cyberchondria. Results from hierarchical regression models indicated that pain catastrophizing predicted unique variance in four dimensions of cyberchondria: compulsion, distress, excessiveness, and reassurance. Findings are consistent with research highlighting the consequences of pain catastrophizing on myriad psychological outcomes. Individuals who catastrophize about pain experiences may be vulnerable to developing severe health anxiety from searching the internet for health information. Implications for research among individuals with chronic pain are discussed.

Paternal Anxiety in Relation to Toddler Anxiety: The Mediating Role of Maternal Behavior.

Despite robust investigations examining the impact of maternal anxiety and parenting behaviors and child anxiety risk, less is understood about the impact of paternal anxiety and parenting behaviors on child anxiety risk, particularly within the broader family context. An Actor Partner Interdependence Model (APIM) was used to examine whether paternal anxiety longitudinally predicted child anxiety risk indirectly through maternal and paternal parenting behaviors, while controlling for maternal anxiety. Both fathers and mothers of 12- to 30-month-olds (n = 94) provided self-report of their anxiety and parenting behaviors. Child inhibited temperament (i.e., anxiety risk) was coded. Two APIMs separately considering encouragement of independence and overprotection were examined. These models revealed no direct relation between parent and child anxiety while controlling for parenting behaviors. Models did suggest that paternal anxiety is indirectly linked with future child anxiety through lower maternal encouragement of independence, but not through maternal overprotection or paternal parenting behaviors.

Seasonal Variation in Pediatric Chronic Pain Clinic Phone Triage Call Volume.

Chronic pain is highly prevalent in youth and often results in significant health care usage and familial distress. Telephone triage nurses in pediatric pain clinics provide support and consultation to families and engage parents of pediatric pain patients in interdisciplinary intervention efforts. Despite evidence of winter predominance in rates of pain-related and psychiatric complaints, seasonal variations have not been examined in terms of the demand placed on pain clinic triage nurses. The present study investigated seasonal patterns in the frequency and type of phone calls made over the course of 1 year to an interdisciplinary outpatient pediatric chronic pain clinic at a large Midwestern children's hospital. Pain complaints, reasons for phone calls, and call outcomes (e.g., medication changes, consultation with medical or mental health providers) were recorded in patient charts and retrospectively reviewed by the clinic registered nurse. A total of 721 calls regarding 253 patients were made over the course of 1 year. Results indicated that overall call volume across pain conditions was more than two times greater in the winter than in the summer (χ2 = 64.13, p < .001), and the odds of a call involving headache pain were almost twice as likely in the winter as in the summer. The majority of calls required consultation with physicians and/or mental health providers. Present data may be useful for pediatric chronic pain clinics making staffing decisions throughout the year because the winter season appears to place a significantly greater demand on triage nurses.

Recommendations for Patient-Reported Outcomes Measurement Information System pediatric measures in youth with chronic pain: a COnsensus-based Standards for the selection of health Measurement INstruments systematic review of measurement properties.

ABSTRACT: The Patient-Reported Outcome Measurement Information System (PROMIS) pediatric measures assess physical, emotional, and social health among children and adolescents. However, their measurement properties have not been systematically examined in youth with chronic pain. A systematic review applying the COnsensus based Standards for the selection of health Measurement INstruments (COSMIN) methodology was conducted to evaluate self-reported PROMIS pediatric measures in youth with chronic pain, assessing 8 measurement properties across all versions (item bank, short form, and computer adaptive testing) from 63 studies covering 25 measures. Moderate or high-quality evidence was most available for content validity, structural validity, internal consistency (measurement precision), and construct validity. Four short-form PROMIS pediatric measures-mobility, anxiety, depressive symptoms, and physical stress experiences-achieved recommendation for the use in chronic pain clinical trials; 7 approached recommendation and 14, including the commonly used PROMIS Pediatric Pain Interference Scale, would be recommended with further evidence. Recommendations were also provided for the use of each measure in observational studies. Overall, based on the existing evidence, a total of 11 self-reported PROMIS pediatric short-form measures, including pain intensity, pain behavior, mobility, sleep disturbance, sleep-related impairment, anxiety, depressive symptoms, psychological stress experiences, physical stress experiences, family relationships, and positive effect, are recommended or approaching recommendation for use in youth ages 8 to 19 years with chronic pain. Research is needed to further establish test-retest reliability, measurement errors, cross-cultural validity, and responsiveness. Future work should expand the evaluation of PROMIS pediatric measures in subpopulations of youth with chronic pain, particularly young children and those with neurodevelopmental disabilities.

Comparison of Pain Characteristics, Strength, and Movement Patterns in Adolescents With Juvenile Fibromyalgia and High Versus Low Fear of Movement.

Physical activity avoidance and fear of movement (FOM) is often observed in individuals with chronic musculoskeletal pain, along with difficulties coping with pain. There is little research regarding how FOM may also relate to reduced physical strength and altered movement patterns that may perpetuate a cycle of pain, FOM, and disability. The objective of this observational study was to compare how adolescents with juvenile fibromyalgia (JFM) exhibiting high versus low FOM (Tampa Scale of Kinesiophobia-11) differed on patient-reported measures of pain, fatigue, catastrophizing and pain interference, and performance-based measures of strength, postural control, and biomechanical function. Participants were youth with JFM (N = 135, Meanage = 15.6 years, 88.9% female) enrolled in an ongoing clinical trial who completed self-report questionnaires and standardized tests, including knee and hip strength, the Star Excursion Balance Test, and the Drop Vertical Jump (with 3 dimensional motion capture). Participants were categorized into Low, Medium, and High FOM groups based on Tampa Scale of Kinesiophobia-11 tertile scores. Relative to the Low FOM group, the High FOM group reported significantly greater fatigue, pain interference and catastrophizing, as well as reduced dominant leg knee strength. Additionally, those with high FOM showed altered lower-extremity movement patterns. This preliminary study highlights the importance of combining self-reported measures of symptoms and functioning with physical assessments to gain a more comprehensive view of the impact of FOM in patients with chronic musculoskeletal pain. The results could inform the development of more precise interventions to reduce FOM using a combination of behavioral and exercise-based interventions. PERSPECTIVE: The results of this study demonstrate the association between FOM, fatigue and pain interference in adolescents with JFM, as well as preliminary evidence for altered movement patterns in that may predispose them to further pain/injury and activity avoidance. GOV REGISTRATION: NCT03268421.

Associations between patient-reported functional disability and measures of physical ability in juvenile fibromyalgia.

ABSTRACT: Juvenile fibromyalgia (JFM) is a chronic condition characterized by symptoms of pain and fatigue and is associated with sedentary behavior and functional disability. Adults with fibromyalgia exhibit deficits in physical fitness as evidenced by lower aerobic capacity and physical endurance, but it is unknown whether these impairments are apparent in adolescents with JFM. Furthermore, the extent to which functional disability and pain interference relate to measures of physical fitness has not been investigated in a pediatric pain population. During a baseline assessment for a clinical trial, 321 adolescents with juvenile fibromyalgia (M age = 15.14, 85.2% female) completed measures of pain intensity, fatigue, JFM symptom severity, functional disability, and pain interference. They also completed 2 validated fitness tasks: (1) the Harvard step test, which assesses aerobic fitness, and (2) the 6-minute walk test, a simple submaximal test of endurance. We examined associations among self-report measures and fitness assessments using bivariate correlations. We then employed hierarchical regression analyses to determine the unique contributions of physical fitness assessments to self-reported functional disability and pain interference. Results indicated that youth with JFM exhibited deficits in aerobic capacity and physical endurance. However, physical fitness explained negligible variance in functional disability and pain interference beyond that accounted for by pain, fatigue, and JFM symptom severity. Scores on available functional disability measures may reflect perceived difficulties in coping with symptoms during physical tasks rather than actual physical capability. Rigorous and sensitive assessments of physical fitness and endurance are needed to determine whether rehabilitation interventions for pediatric pain improve physical functioning.

Clinic-Based Characterization of Adolescents and Young Adults With Migraine: Psychological Functioning, Headache Days, and Disability.

Background and Objectives: This cross-sectional observational study retrospectively examined clinical data collected from adolescents and young adults (AYAs) seeking care in a specialty headache clinic. We characterized participants' headache characteristics and psychological functioning and examined the association between self-reported anxiety and depressive symptoms and headache frequency, severity, and disability. Methods: During their clinic visit, AYAs (M age = 18.36; range = 14-32, 79.5% female) completed an intake questionnaire and reported about their headache characteristics (i.e., frequency, severity, and duration of symptoms in months), mental health history (i.e., previous diagnosis of an anxiety or depressive disorder), and utilization of emergency department (ED) services for migraine. AYAs also completed psychometrically validated screening tools for anxiety and depressive symptoms (i.e., the GAD-7 and PHQ-9). We computed descriptive statistics and examined associations among scores on psychological measures and headache characteristics, including migraine-related disability. We also tested whether individuals with clinically elevated GAD-7 and PHQ-9 scores had higher levels of disability relative to those with fewer/subclinical levels of anxiety and depressive symptoms. Results: Participants (N = 283) reported more than 19 headache days per month on average, with more than 90% describing their average headache intensity as moderate or severe. Nearly half of AYAs reported severe headache-related disability. Approximately one-quarter of AYAs reported a previous diagnosis anxiety or depressive disorder diagnosis, and more than one-third scored above clinical cutoffs on the PHQ-9 and GAD-7. Higher scores on both psychological screening instruments were associated with greater headache frequency. More than 10% of patients endorsed current suicidal ideation; this was not related to headache-related disability. Participants reported a high degree of ED utilization for headache; these rates were unrelated to endorsement of psychological comorbidities. Discussion: In this sample of AYAs, headache characteristics were generally unrelated to scores on measures on psychological functioning. However, the observed rates of clinically elevated anxiety/depressive symptoms and suicidality in this sample of AYAs underscore the importance of screening for psychological comorbidities in neurology clinics that serve this age group, irrespective of self-reported disability. Results also emphasize the need to expand access to behavioral health services for AYAs with headache disorders and the importance of incorporating a biopsychosocial perspective to the transition of health care from pediatrics to adult neurology practice.

Management of Chronic Migraine in Children and Adolescents: Where are We in 2022?

Migraine is a neurological disorder that affects millions of children and adolescents worldwide. Chronic migraine is a subtype of migraine in which patients experience headaches for more days than not each month, with accompanying symptoms of phonophobia, photophobia, nausea or vomiting for most of these headaches. The burden and impact of chronic migraine in the daily lives of children and adolescents is substantial, requiring a holistic, multidisciplinary, and biopsychosocial approach to conceptualization and treatment. The purpose of this review is to provide a comprehensive "2022" overview of acute and preventive treatments for the management of chronic migraine in youth. We first describe diagnostic criteria for chronic migraine and highlight the state of evidence for acute and preventive treatment in children and adolescents. We then discuss emerging treatments currently receiving rigorous clinical research effort, special considerations for the treatment of chronic migraine in children and adolescents, and avenues for improving existing treatments and expanding access to evidence-based care.

FIT Teens RCT for juvenile fibromyalgia: Protocol adaptations in response to the COVID 19 pandemic.

Objective: To describe protocol adaptations to the Fibromyalgia Integrative Training for Teens (FIT Teens) randomized controlled trial in response to the COVID-19 pandemic. The overarching aims of the FIT Teens multi-site 3-arm comparative effectiveness trial are to assess whether a specialized neuromuscular exercise training intervention combined with cognitive-behavioral therapy (CBT) is superior to CBT alone or graded aerobic exercise alone. Design/methods: The trial was originally designed as an in-person, group-based treatment with assessments at baseline, mid- and post-treatment, and four follow-up time points. The original study design and methodology was maintained with specific modifications to screening, consenting, assessments, and group-based treatments to be delivered in remote (telehealth) format in response to COVID-19 restrictions. Results: Study enrollment was paused in March 2020 for five months to revise operations manuals, pilot remote treatment sessions for accuracy and fidelity, complete programming of REDCap assent/consent and assessment materials, train study staff for new procedures and obtain regulatory approvals. The trial was relaunched and has been successfully implemented in remote format since July 2020. Trial metrics thus far demonstrate a consistent rate of enrollment, strong attendance at remote treatment sessions, high retention rates and high treatment fidelity after protocol adaptations were implemented. Conclusions: Preliminary findings indicate that FIT Teens protocol adaptations from in-person to remote are feasible and allowed for sustained enrollment, retention, and treatment fidelity comparable to the in-person format. Methodologic and statistical considerations resulting from the adaptations are discussed as well as implications for interpretation of results upon completion of the trial.

Systematic Review of Autonomic Nervous System Functioning in Pediatric Chronic Pain.

OBJECTIVES: Chronic pain is a common and debilitating health problem that impacts up to one third of children and adolescents. The pathophysiological mechanisms of chronic pain are complex, but considerable research links dysfunction of the autonomic nervous system (ANS) and chronic pain in adults. No review of ANS functioning has been conducted in pediatric chronic pain. We systematically reviewed studies examining ANS activity among youth with primary chronic pain conditions. METHODS: A systematic search of PsycINFO, PubMed, and CINAHL was conducted using specific search terms. Articles were included if studies measured heart rate, blood pressure, heart rate variability, galvanic skin responses, or pupillometry among children or adolescents with a chronic pain condition. Studies examining these factors in the context of a specific disease-related pain condition were excluded. RESULTS: Of the 1304 articles screened, 15 studies met the criteria for inclusion in this review. All included studies were cross-sectional and primarily included youth with abdominal pain. Results revealed preliminary evidence of reduced parasympathetic activity among youth with pain as measured by heart rate variability. However, results were mixed across ANS indices. Measurement and procedural differences, in addition to a lack of control groups in some studies, limit the interpretability of the reviewed findings. DISCUSSION: Additional studies with larger and more diverse samples of youth with various chronic primary pain conditions are needed to delineate possible relationships among ANS functioning and the development and maintenance of chronic pain in children and adolescents. Clinical implications and avenues for future research are discussed.

A qualitative study of risk and resilience in young adult women with a history of juvenile-onset fibromyalgia.

BACKGROUND: Juvenile-onset Fibromyalgia (JFM) is a chronic pain condition characterized by widespread musculoskeletal pain, fatigue, sleep difficulties, mood concerns, and other associated symptoms. Although diagnosed in childhood, JFM often persists into adulthood can result in continued physical, social, and psychological impairment. The purpose of this qualitative study was to identify themes of risk and resilience for long-term outcomes among young adults diagnosed with JFM in childhood. METHODS: The sample included 13 young adults (ages 26-34) who had been diagnosed with JFM in adolescence. Focus groups were used to elicit qualitative information about living with JFM and perceived challenges and buffering factors impacting their adjustment. RESULTS: The majority of participants (80%, N = 12) continued to meet criteria for fibromyalgia (FM). An iterative, thematic analysis revealed themes of resilience (e.g., greater acceptance, re-setting expectations, active coping, addressing mental health) and risk (e.g., lack of information, stigma, isolation, negative healthcare experiences). CONCLUSION: Results suggest the need for longer follow-up of youth with JFM as they transition to adulthood with multidisciplinary care and more attention to education about JFM and associated symptoms such as fatigue, as well as ongoing support for coping and mental health needs. A holistic approach to care during the transition years could be beneficial to minimize impact of JFM on long-term functioning.