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

Prepared by Prue Morgan

Citation: Mitchell DL, Shlobin NA, Winterhalter E, Lam SK, Raskin JS. Gaps in transitional care to adulthood for patients with cerebral palsy: a systematic review. Child’s Nervous System 2023 Nov;39(11):3083-3101.   doi: 10.1007/s00381-023-06080-2

Study type/population: This systematic review collated information relating to health, functional and social outcomes following transition from paediatric to adult healthcare for young people with cerebral palsy (CP) from a range of stakeholder perspectives.

Key findings: Twenty-seven studies were included (all from high income countries), 23 of which investigated the experience of transition-aged people with CP, and four studies investigated transitional care programs. Factors associated with improved transition outcomes included family participation, promotion of self-efficacy, and meeting the adult team before transition. Poor outcomes related to transition included housing instability, unemployment, difficulty forming relationships, increased hospital admission rates, and decreased use of rehabilitation services. Barriers to quality transition programs included poor health team communication, limited adult provider options, and lack of financial resources for specialised care. No standardised transition approach was identified.

Translation to practice: Young people with CP want a comprehensive transition experience that prioritises capacity building and personal empowerment. Strategies to improve transitional care include early discussion and transition planning with pediatricians, community engagement, education and training, assigning a patient navigator or case worker to transition age patients, and creation of best practice guidelines to standardize transition programs.