185 Palliative care support for people with duchenne muscular dystrophy (DMD): does a shift in disease course require a shift in palliative care provision?

<h3>Background</h3> Duchenne Muscular Dystrophy (DMD) is a progressive muscle-wasting condition associated with a reduced life-span. A systematic review in 2021 demonstrated increasing survival rates: median survival of 28.1 years born after 1990, compared to 18.3 years born prior to 1970 and 24 years born 1970–1990.¹ We explore the potential impact of this shift in disease trajectory and hospice provision. <h3>Methods</h3> Working with DMD Care UK, we surveyed hospices in England regarding admission criteria, services available, and specifically DMD care provision. A focused view of admission criteria - including age limits - for children and young persons (CYP) hospices was obtained via HospiceUK’s online ‘Hospice Care Finder.² <h3>Results</h3> 207 hospices were contacted, 43 organisations completed the survey, 50% identified as Adult Hospices, 30% as Children’s hospices. All respondents said they could provide services to people with DMD; Children’s hospices reported 71% currently care for DMD patients compared to just 22% in adult hospices. 40 CYP Hospices were identified; 62% (n = 25) had a referral age cut-off &lt;/= 18 years, 78% (n=31) &lt;/= 25 years; 28% (n=11) expressed that they would care for their patients beyond the referral cut-off age; 6 locations extending until 25yrs and one supporting up to 35 years. 30% of services were linked to adult services within the same organisation. <h3>Conclusions</h3> With average age of ventilatory support at 20 years,³ and the current median survival of 28.1 years¹ we highlight the risk of loss of care-continuity for DMD patients as they transition from palliative services for CYP to those for adults – and at a critical time in their illness when their palliative care needs are likely to be escalating. This prompts the question; ‘Do those working in adult services have the knowledge and skills to support people with DMD given it has previously been regarded as a paediatric condition?’ <h3>References</h3> Broomfield J, Hill M, Guglieri M, Crowther M, Abrams K. Life Expectancy in Duchenne Muscular Dystrophy. <i>Neurology</i> 2021;<b>97</b>(23):e2304-e2314. Hospice Care Finder, HospiceUK, https://www.hospiceuk.org/hospice-care-finder accessed 15/10/2024 Mercuri E, Bonnemann CG &amp; Muntoni F. Muscular dystrophies, Comprehensive overview of the clinical and genetic aspects of muscular dystrophies.<i> Lancet</i> 2019;<b>394</b>:2025–2038