Background: Sturge-Weber syndrome (SWS) is a rare, sporadic genetic condition associated with learning disability, hemiplegia, epilepsy and headache for which children require multidisciplinary management. Guidelines for transition recommend: planning from age 14 years, identification of a key coordinator and a written transition plan for the young person.
Objective: To assess experiences of the transition process from paediatric to adult services for young people with SWS and their families.
Methods: An audit of all children and young adults aged 12–22 years known to the Sturge Weber Foundation (UK) database. Questionnaires were developed from existing healthcare transition questionnaires, and adapted to specifically evaluate key aspects of care and provision for young people with SWS and their parents.
Results: Twenty families completed a parent-rated questionnaire; in 14 cases the young person with SWS completed a patient-rated questionnaire (mean age17.5 years; range 12–22 years, 50% male). 55% had experienced both adult and paediatric services. Fewer appointments had been offered in adult health services compared to paediatric services across all disciplines identified, with the exception of psychiatry. These discrepancies were most marked for general practice, neurology, physiotherapy and occupational therapy. Parents/carers more often rated adult services as ‘poor’ in response to questions about professionals’ understanding of their child’s condition (56%), multidisciplinary communication (67%), and the ability to meet their child’s needs (56%).
Mean age at which transition planning started was 16.77 years. Seven out of 13 respondents could not identify a key professional involved in their transition process; 80% felt there was no clear handover of information to adult services; one respondent had received a written transition plan.
The areas most frequently rated by young people with SWS as causing difficulties included: learning, anxiety, socialising, vocational/independence skills, and headaches. Whilst most had received support with respect to their learning needs and headaches, the majority had received no help in the other areas.
Conclusions: Currently, the needs of young people with SWS, in common with young people with other causes of disability are not being adequately met by adult services. Planning for transition requires improvement, with access to services that are responsive to complex childhood disorders.