Aims To review the triggers for referral to hospice care of patients with Duchenne Muscular Dystrophy (DMD), and to identify contemporaneous links with possible events in the disease trajectory: cardiac failure, non-invasive ventilation (NIV), spinal surgery and intensive care (PICU) admissions.
Method Patients with DMD were identified using a combination of the Oxford Neuromuscular Service database and Helen House Children’s Hospice (HH) records. HH notes and clinic letters were obtained and the PICU database at the John Radcliffe (JR) was accessed.
Results 47 patients were active users of the hospice service (age range 6–25 years). Average age at referral was 14 years 3 months. 23 patients (48.9%) use NIV, 4 (8.5%) of whom were established on NIV prior to hospice referral and 12 (25.5%) within 3 years of referral (range 0–11 years post-referral). 15 patients (31.9%) had spinal surgery with 8 (17%) prior to referral. 1 (2.1%) had surgery within 1 year and 5 (10.6%) within 5 years of referral. 17 patients require cardiac medication (36.2%). 7 (14.9%) patients had PICU admissions.
Discussion Of the patients with DMD referred to the hospice, 48.9% used NIV, 31.9% had spinal surgery and 36.2% required cardiac medication, which may indicate disease progression as a reason why hospice care was accessed, rather than a significant illness/PICU admission. Further work will include reviewing the reasons for hospice referral in children without those mentioned risk factors, as well as exploring professional/patient barriers to referral in those who have advanced disease and no hospice support. In addition, analysing data from a cohort of patients with DMD who have died would allow time of death in relation to hospice referral and presence/absence of risk factors to be evaluated, ensuring that patients have had the opportunity to access adequate and timely palliative care in an appropriate setting.
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