Gaps in transitional care to adulthood for patients with cerebral palsy: a systematic review

PURPOSE: The transition from pediatric to adult care can be complex and difficult to navigate for adolescents with cerebral palsy (CP). We aimed to assess the current state of transitional care for young persons with CP and delineate guidelines for best practice with opportunities for intervention. METHODS: A systematic review was conducted using PRISMA guidelines to search PubMed, Embase, and Scopus databases. Articles were screened for relevance via title and abstract prior to full-text review. RESULTS: Of 3151 resultant articles, 27 observational studies were included. Fourteen (52%) studies assessed clinical outcomes of patients with CP during and post-transition. Transition-associated poor outcomes included housing instability, unemployment, difficulty forming relationships, increased hospital admission rates, and decreased use of rehabilitation services. Factors associated with improved outcomes included family participation, promotion of self-efficacy, and meeting the adult team before transition. Nine (33%) studies conducted interviews with transition-age persons with CP. Key themes were a lack of transition preparedness, difficulty navigating the adult system, gaps in seamless care, and limited accessibility to specialists and environments suitable for patients with complex care needs. Four (15%) studies examined features of current transition services. Perceived barriers included poor communication within health service teams, limited adult providers accepting CP patients, and the lack of financial resources for specialized care. There was no standardized transition tool or approach. CONCLUSION: These findings underscore the importance of a planned transition process in optimizing long-term medical and psychosocial outcomes for persons with CP. Further research, including translational, team-based, and community-engaged research, are needed. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00381-023-06080-2.