Evaluation of transition services for children and young people with chronic neuromuscular conditions

B Sagade, C Edwards, A Aarvold, P Ross

University Hospital Southampton

The National Institute for Health and Care Excellence (NICE) has set guidelines serving as a benchmark for high quality transition services for children and young people (CYP) with chronic health conditions. We aimed to assess the services provided by the transition program running at our tertiary care hospital and to identify the unmet needs of health care in adults with neuromuscular disorders (NMDs).

A questionnaire was designed through consensus amongst professionals and review of literature. An online survey of parents, caregivers, and patients going through NMDs was conducted to identify lacunae in transition services being provided to them.

53 families who had been transitioned were invited to participate in the study and 39 responses were received. Only 9 patients (23%) agreed that they received a transition plan for transfer of further care to an adult orthopaedic surgeon. The average score of satisfaction with the transition plan was 4/10. Care of their general health was taken over by their GP in 49% of them, while 28% patients did not have any doctor looking after them. 69% patients did not have any orthopaedic supervision whereas, 53% did not have any inputs from Spine surgeons since transitioning. 33% patients did not have continuing physiotherapy. 41% patients reported some decline and 6 (15%) reported a significant decline in their musculoskeletal health.

Transition between services is challenging for families with tremendous scope for improvement. Coordination of care between Paediatric and adult services can make transition seamless for patients.