Identification and prioritization of transitional care interventions for adolescents and young adults with childhood-onset disabilities: a systematic review

BACKGROUND: Transition from the pediatric to adult health care system is a complex process requiring multidisciplinary considerations. Despite the significant detrimental health outcomes associated with poor transition, there exists only a paucity of evidence on the most effective transitional care interventions for adolescents with chronic health disabilities. This study aims to synthesize and prioritize the evidence on transitional care interventions to improve the quality of life for adolescents and young adults with childhood-onset disabilities, including neurodevelopmental disorders. METHODS: Included studies examined transitional care interventions for adolescents and young adults (12 to 24 years of age) with childhood-onset disabilities. MEDLINE, EMBASE, PsycINFO, and CINAHL were comprehensively searched for relevant experimental, quasi-experimental, and observational studies published in the last 26 years. Two reviewers independently completed study screening, data extraction, and risk of bias assessment using the Revised Cochrane Risk of Bias Tool and ROBINS-I. RESULTS: Fifty-two studies reporting on a range of neurological conditions were included in the systematic review. Five studies reported on quality of life, but statistically significant improvements were noted in 1 study only. Studies found statistically significant improvements in disease-related knowledge (n=5), satisfaction (n=5), self-advocacy and management skills (n=12), and transitional readiness for patients (n=4). Transitional care interventions targeted patients, families and/or caregivers, and health care providers, and displayed great heterogeneity in their characteristics. CONCLUSIONS: There is limited evidence on the impact of transitional care interventions on quality of life for adolescents and young adults with childhood-onset disabilities. Transitional care interventions can be effective in improving both patient and provider outcomes, including disease-related knowledge, documentation of transitional issues, satisfaction, self-advocacy and management skills, and transitional readiness. Future research should investigate and prioritize methods of increasing the long-term efficacy of transitional care. The initiation of transition at an early age could conceivably contribute to long-term outcome improvements.