• Sarah Jane Corpuz Tapawan, Furene Sj Wang, Ming Wei Lee, Aaron Qh Chua, Jeremy By Lin, Velda Han, Michael Tc Lim, Hian Tat Ong, and Stacey Kh Tay.
• Department of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore.
• Ann Acad Med Singap. 2020 Feb 1; 49 (2): 72-77.

IntroductionWith better medical care, patients with Duchenne muscular dystrophy (DMD) now live longer but face more complex medical and social needs. This study described the perceptions of DMD patients and their families of disease-specific palliative care services in Singapore.Materials And MethodsA multicentre, cross-sectional study involving DMD patients and their families was carried out. Structured questionnaires were administered to them to collect data on their understanding of palliative care, health services accessed and desired by them and quality of life.ResultsA total of 30 pairs of DMD patients and their caregivers responded. Most patients were >13 years old (70%) and non-ambulant (86%). Most of them and their families (70%) were also not aware of palliative care and support services that were available to them in Singapore. Additionally, they perceived greater financial assistance and better transport services as resources that could better meet their care needs. The presence of scoliosis and need for ventilatory support were associated with lower quality of life in patients.ConclusionThere is a need to improve awareness and provision of palliative care services for DMD patients in Singapore where discussion of end-of-life care is often considered taboo. Prevention and correction of scoliosis and provision of appropriate ventilatory support may improve quality of life in DMD patients.

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