IMPORTANCE That too few youth with special health care needs make the transition to adult-oriented health care successfully may be due, in part, to lack of readiness to transfer care. There is a lack of theoretical models to guide development and implementation of evidence-based guidelines, assessments, and interventions to improve transition readiness. OBJECTIVE To further validate the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) via feedback from stakeholders (patients, parents, and providers) from a medically diverse population in need of life-long follow-up care, survivors of childhood cancer. DESIGN Mixed-methods participatory research design. SETTING A large Mid-Atlantic children's hospital. PARTICIPANTS Adolescent and young adult survivors of childhood cancer (n = 14), parents (n = 18), and pediatric providers (n = 10). MAIN EXPOSURES Patients and parents participated in focus groups; providers participated in individual semi-structured interviews. MAIN OUTCOMES AND MEASURES Validity of SMART was assessed 3 ways: (1) ratings on importance of SMART components for transition readiness using a 5-point scale (0-4; ratings >2 support validity), (2) nominations of 3 “most important” components, and (3) directed content analysis of focus group/interview transcripts. RESULTS Qualitative data supported the validity of SMART, with minor modifications to definitions of components. Quantitative ratings met criteria for validity; stakeholders endorsed all components of SMART as important for transition. No additional SMART variables were suggested by stakeholders and the “most important” components varied by stakeholders, thus supporting the comprehensiveness of SMART and need to involve multiple perspectives. CONCLUSIONS AND RELEVANCE SMART represents a comprehensive and empirically validated framework for transition research and program planning, supported by survivors of childhood cancer, parents, and pediatric providers. Future research should validate SMART among other populations with special health care needs.

Measurement development in transition readiness is still an underdeveloped area. Measures require further testing and new measures are needed. Recommendations include testing measures with larger and diverse samples, ground measures in theory, test psychometrics, and involve multiple stakeholders in measure development.

Background For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. Methods We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. Results Participants reported evaluating transition success and failure using healthcare utilization outcomes (e.g. maintaining continuity with adult providers), health outcomes (e.g. stable symptoms), and quality of life outcomes (e.g. attending school). The patients' level of developmental maturity (i.e. ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e. helicopter parent vs. optimally-involved parent) also influenced outcomes as well as the degree of support by providers (e.g. care coordination). Conclusion IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care.

Background Cancer-related fatigue is one of the most pervasive and debilitating side-effects of cancer treatment and adolescents consistently rate cancer-related fatigue as one of the most distressing aspects of treatment. Because fatigue is also high in adolescents without cancer, the current study aims to describe fatigue in adolescents with cancer relative to a control group and to identify associates of such fatigue. Knowing this is important for understanding the extent of the problem in adolescents with cancer relative to healthy adolescents and for understanding who is most at risk for fatigue and related distress. Procedure Adolescents with cancer and their caregivers (n =102) and adolescents without a history of chronic health conditions and their caregivers (n =97) completed the Multidimensional Fatigue Scale and measures of depression, quality of life (QoL), affect, coping, and family functioning. Results Adolescents with cancer and their caregivers reported significantly more adolescent fatigue across all domains (with the exception of adolescent reports of cognitive fatigue) relative to adolescents without chronic health conditions. Higher fatigue was significantly related to adolescent report of more symptoms of depression, poorer QoL, higher negative affect, less positive affect, and behavioral disengagement coping style. Fatigue was not related to active coping or family functioning. Conclusions Adolescents with cancer experience significantly more fatigue than peers without chronic health conditions. Reports of fatigue are closely related to multiple indicators of psychosocial well-being, suggesting that fatigue may be an important cancer-related symptom to assess and manage to improve adolescent QoL.

Young adult survivors should receive anticipatory guidance about expectations for delivery and content of adult-focused cancer-related follow-up care.