223P Mental health support for children and young people with Duchenne muscular dystrophy – who, when and how across the UK

Abstract

Duchenne muscular dystrophy (DMD) is a progressive neuromuscular disease caused by mutations in the gene that codes for dystrophin. Patients experience a gradual loss of muscle starting in childhood that usually leads to death in the late 20s. Whilst the physical impact is well documented, the psychological and neuropsychological impact of this condition on children and young people (CYP) with DMD and their families has been largely overlooked and is poorly understood. The objective of the survey was to acquire qualitative and quantitative information about approaches to and provision for mental health (MH) needs in CYP with DMD across the UK. To identify areas of good practice as well as gaps in service provision and variation and inequity in access to services which will inform approaches to service improvement. Professionals across the NorthStar network (consortium of all the UK neuromuscular paediatric centres) and parents/caregivers will be recruited using separate online surveys. Questions have been designed by the project team and cover a range of similar themes regarding psychosocial support allowing comparison across the groups. CYP with DMD and their parents/caregivers will be invited to separate focus groups or interviews to discuss their views on support for mental health in DMD. Results are in progress. We hypothesise that MH support for CYP and their carers will be identified as an essential component of care that should be offered in the neuromuscular clinic, as part of a broader interdisciplinary integrated approach. Understanding viewpoints from different stakeholders is essential in the early stages of this project to help guide future research ideas and clinical practice. Further engagement with CYP and parents/carers regionally and nationally is crucial to service development. This project will be part of the wider DMD Care UK project which aims to provide consensus and an evidence base for the highest standard of care for all aspects of DMD. This is leading to UK-wide care recommendations, referral pathways, prescription guidance and clinical practice guidelines. Our work will embed psychosocial care within multidisciplinary teams treating DMD throughout the UK.