• Lorna K Fraser, Anne-Marie Childs, Michael Miller, Jan Aldridge, Sue Manning, Patricia A McKinney, and Roger C Parslow.
• Paediatric Epidemiology Group, Division of Epidemiology, University of Leeds, Leeds, UK. l.k.fraser@leeds.ac.uk
• Palliat Med. 2012 Oct 1;26(7):924-9.

BackgroundProgressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children.AimTo describe the clinical and demographic profile of children referred to a Children's hospice in the UK with progressive neuromuscular disease.Setting/ParticipantsAll children and young people with progressive neuromuscular disorders referred to Martin House Children's Hospice between 1987 and 2010.DesignRetrospective cohort study.Results300 children with progressive neuromuscular disease were referred to the hospice. Seventy percent (210) of these children had Duchenne Muscular Dystrophy, 22% (67) had Spinal Muscular Atrophy (34 with Type I) and 8% had other neuromuscular diseases. Numbers of referrals have not significantly increased over the last 15 years, although an increasing number come from a South Asian background (from 4% to 32%) and a higher number of children have conditions other than Duchenne Muscular Dystrophy. A total of 55.3% (166) of all referrals came from areas of the highest deprivation. Survival patterns varied by diagnostic group, but ethnicity and deprivation were not associated with survival in these children.ConclusionsThe profile of children with progressive neuromuscular conditions who were referred for palliative care has changed over the last 20 years, with a different spectrum of underlying diagnoses and a greater number from a South Asian background. The higher than expected proportion of children living in areas of high deprivation has been consistent over time.

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