Medical Student Chicago Medical School / Rosalind Franklin University Chicago, Illinois, United States
Introduction: The transition from pediatric to adult care can be complex and difficult to navigate for adolescents with cerebral palsy (CP), with impact on long-term psychosocial, cognitive, and health-related outcomes. A systematic review was conducted to assess the current state of transitional care for young persons with CP and delineate guidelines for best practice with opportunities for intervention.
Methods: PubMed, Embase, and Scopus were searched. Following deduplication, articles were first screened for relevance by title and abstract, followed by full text. Bibliographic data were extracted.
Results: Of 3,151 resultant articles, 27 observational studies were included. Fifteen (55%) studies assessed clinical outcomes of patients with CP during and post-transition to adult health care services. Transition-associated poor outcomes included housing instability, unemployment, difficulty forming intimate relationships, increased hospital admission rates and use of medication, and decreased participation in organized activities and 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 and their caregivers. Key themes were a lack of preparedness for the transition to adulthood, difficulty navigating the adult healthcare system, gaps in seamless care, and limited accessibility to specialists, primary care providers, and environments suitable for patients with complex care needs. Three (11%) studies examined features of current transition services. Perceived barriers included poor communication within health service teams, limited adult providers accepting CP patients, and 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. Patients, caregivers and providers express unmet needs of this vulnerable population. Further research and action, including translational, team-based, and community-engaged research are needed.
