The use of the Gross Motor Function Classification System in cerebral palsy registers: quo vadis?

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. Cerebral Palsy Alliance is delighted to bring you this free weekly bulletin of the latest published research into cerebral palsy. Our organisation is committed to supporting cerebral palsy research worldwide-through information, education, collaboration and funding. This free weekly bulletin is just one of our activities. Please find out more at www. Aim: The aim of this study was to describe the distribution of motor severity levels and temporal trends in an Australian population cohort and to review the distribution of Gross Motor Function Classification System (GMFCS) levels across cerebral palsy (CP) registries worldwide. Methods: Data were extracted from the Victorian Cerebral Palsy Register for 3312 individuals (1852 males, …