Models of transitional care for young people with complex health needs: a scoping review

Background Young people with complex healthcare needs (CHNs) face the challenge of transferring from child to adult health services. This study sought to identify successful models of transitional care for young people with CHNs. Three conditions were used as exemplars: cerebral palsy, autism spectrum disorders and diabetes. Methods Scoping review: using search terms concerning transitional care, four databases were systematically searched for papers published in English between 1980 and April 2010. Additional informal search methods included recommendations from colleagues working with young people with each of the three conditions and making contact with clinical and research teams with expertise in transitional care. Inclusion and exclusion criteria were applied to define the papers selected for review. A separate review of policy documents, adolescent health and transition literature was also undertaken; 10 common summary categories for the components of high-quality services were identified. All papers were coded using a framework analysis which evaluated the data in two ways using the 10 transition categories and four elements of Normalization Process Theory that are important for successful implementation and integration of healthcare interventions. Results Nineteen papers were selected for review. A very limited literature of models of service provision was identified for young people with cerebral palsy and diabetes. No models were identified for young people with autism spectrum disorders. Furthermore most publications were either descriptions of new service provision or time-limited pilot studies with little service evaluation or consideration of key elements of effective implementation. Conclusions Despite agreement about the importance of effective transitional care, there is a paucity of evidence to inform best practice about both the process of and what constitutes effective transitional care. There is therefore an urgent need for research to evaluate current transitional care practices for young people with CHNs.