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

Abstract

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.

Satisfaction with health care services in young people with cerebral palsy in the transition period: results from a European multicenter study

“…A systematic review of observational studies showed transition-associated poor outcomes including 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 ( 7 ).…”

“…This is accompanied by risks of a deterioration of care, the underutilization of services and ultimately poor health outcomes. Gaps in transitional care had been identified and recommendations for best practice were established ( 7 , 8 ). Also, for young patients with widespread chronic diseases, care structures to address the obstacles associated with the transition process were established, e.g., transition programs ( 9 ).…”

Cervicothoracic Ventral-Dorsal Rhizotomy for Treatment of Brachial Hypertonia in Cerebral Palsy

“…Transitional care inadequacies represent major barriers for CP patients [33]. In such cases with specialized procedures pediatric neurosurgeons need to extend their expertise to the unique requirements of adult patients, ensuring they receive comprehensive and effective care.…”

Defining the gaps in transitional care to adulthood for patients in paediatric surgical specialties: a scoping review protocol

“…Transition programmes have been described in several paediatric conditions such as transplant surgery 5 or cerebral palsy. 6 These interventions have shown the potential to improve timely access to specialised care and strengthen patient knowledge about their condition. 7 8 Although Mackie et al were able to reduce delays of access to care by 5 months in their transition intervention for paediatric cardiac surgery, there were no differences between the intervention and control group in cardiac re-intervention or readmissions.…”