747 Palliative Care for Children and Young People with Neuromuscular Conditions in Yorkshire, Uk 1987-2008

Abstract

Background: Martin House Children's Hospice (MH) is located in Yorkshire, UK. It cares for children and young people with life threatening or life limiting conditions diagnosed before the age of 19 years until the age of 35 years. Many neuromuscular disorders are life limiting and therefore these children and young people may benefit from specialist palliative care services. Methods: Retrospective study using clinical database at MH from 1987 to 2008. Results: 274 patients with neuromuscular diagnoses were referred to Martin House (MH) during this time period. This is 18% of total referrals during this time period. 70.1% (192) had a diagnosis of Duchenne Muscular Dystrophy (DMD) with a peak in referrals in the year after the opening of MH, 24.1% (66) Spinal Muscular Atrophy (SMA) and 5.8% (other neuromuscular diagnoses). The mean age at referral was 9.7 years (SD 5.2) but this was significantly higher in DMD (mean 11.6, SD 3.9) than the other two groups although age at referral of DMD patients has decreased from a mean of 16 to 10 years during this period. The survival patterns differ significantly between the three groups with children with SMA having a steeper curve and therefore a significantly shorter survival time (mean 0.25 years) compared to DMD patients (mean 8.7 years). Conclusions: Children and young people with neuromuscular diagnosis form a large proportion of the referrals to a children's hospice. The survival patterns highlight the different palliative care needs of the children and young people with subgroups of neuromuscular disease.