CONTEXT: Transition from the pediatric to the adult health care system is a complex process that should include medical, psychosocial, educational, recreational, and vocational considerations. OBJECTIVE: In this systematic review, we aim to synthesize the evidence on transitional care interventions (TCIs) to improve the quality of life (QoL) for adolescents and young adults with childhood-onset disabilities, including neurodevelopmental disorders. DATA SOURCES: Four electronic databases (Medline, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature) were searched. STUDY SELECTION: In the included studies, researchers examined TCIs for adolescents and young adults (12-24 years of age) with childhood-onset disabilities. Studies were experimental, quasi-experimental, and observational studies published in the last 26 years. DATA EXTRACTION: Two reviewers independently completed study screening, data extraction, and risk-of-bias assessment. RESULTS: Fifty-two studies were included. Five studies reported on QoL, but statistically significant improvements were noted in only 1 of these studies. Significant improvements were also found in secondary outcomes including disability-related knowledge and transitional readiness. TCIs targeted patients, families and/or caregivers, and health care providers and exhibited great heterogeneity in their characteristics and components. LIMITATIONS: Inconsistent reporting on interventions between studies hindered synthesis of the relationships between specific intervention characteristics and outcomes. CONCLUSIONS: Although there is limited evidence on the impact of TCIs on the QoL for youth with childhood-onset disabilities, there is indication that they can be effective in improving patient and provider outcomes. The initiation of transition-focused care at an early age may contribute to improved long-term health outcomes in this population.

These results provide evidence for the effectiveness of goal-focused, community-based experiential life skills interventions to support skill development in youth with a disability and help them prepare for transition to adult life.

The model will be of use to managers and service organizations seeking to develop an integrated programme of community-focused therapeutic recreation and life skills services based on a collaborative capacity-building approach.

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This study supports the positive contribution of individualized measures to evaluate outcomes within life skill programs for children with disabilities.

Transitional care interventions have the potential to optimize continuity of care, improve health outcomes and enhance quality of life for adolescents and young adults living with chronic childhood-onset disabilities, including neurodevelopmental disorders, as they transition to adult health and social care services. The paucity of research in this area poses challenges in identifying and implementing interventions for research, evaluation and implementation. The purpose of this project was to advance this research agenda by identifying the transitional care interventions from the scientific literature and prioritize interventions for study. A modified-Delphi approach involving two rounds of online surveys followed by a face-to-face consensus meeting with knowledge users, researchers and clinician experts in transitional care (n = 19) was used. A subsequent virtual meeting concluded the formulation of next steps. Experts rated 16 categories of interventions, derived from a systematic review, on importance, impact, and feasibility. Seven of the 16 interventions categories received a mean score rating of ≥7 (out of 10) on all three rating categories. Participants then rank ordered the reduced list of seven interventions in order of priority and the top four ranked interventions advanced for further discussion at a consensus meeting. Using the Template for Intervention Description and Replication (TIDieR) checklist as a guide, the participants identified that a study of a peer system navigator was worthy of future evaluation. This study highlighted that transitional care interventions are complex and multifaceted. However, the presence of a peer to support system navigation, advocacy and individual and family education was considered the most ideal intervention addressing the current gap in care. Future research, which aims to engage patients and families in a co-design approach, is recommended to further develop this intervention.

Introduction Transition from pediatric to adult care has significant implications for health outcomes in youth with special health care needs. To optimally support the transition, health care and social service providers must work collaboratively with youth and families in service planning, implementation, and evaluation. Based on interviews with 15 youth and their families, we developed an arts-informed interprofessional education activity titled Transitions Theatre using the method of readers’ theater. Methods Three educators with lived experience (one former pediatric rehabilitation client and two parents of youth with special health care needs) and three academic/clinical educators codesigned the transitions. We conducted four online workshops (14–20 participants each). Results A total of 67 people participated: 59 students from 11 health disciplines and seven postlicensure clinicians and one trainee from five disciplines (e.g., occupational therapy, life skills coaching, early childhood education). Twenty-six participants answered both pre- and postworkshop surveys and reported a positive shift in their understanding of client and family perspectives, their roles in transition support, and other providers’ roles in transition support. After the workshop, learners felt more confident with transition support and interprofessional collaboration. The perspectives of the educators with lived experience aligned with the theater scripts and enhanced learners’ empathetic engagement with the topic. Discussion The evidence-based teaching approach of readers’ theater and our coteaching model offered learners a unique opportunity to learn about the challenges clients and their families face at the time of transition to adulthood and identify their role in an interprofessional transition support.