Please use this identifier to cite or link to this item: https://doi.org/10.47102/annals-acadmedsg.2019163
Title: Perspectives on Palliative Care Among Duchenne Muscular Dystrophy Patients and Their Families in Singapore
Authors: Tapawan, Sarah Jane Corpuz 
Wang, Furene SJ 
Lee, Ming Wei
Chun, Aaron QH
Lin, Jeremy BY 
Han, Velda 
Lim, Michael TC 
Ong, Hian Tat 
Tay, Stacey KH 
Keywords: Advance care planning
Palliative support services
Quality of life
Issue Date: Feb-2020
Publisher: ACAD MEDICINE SINGAPORE
Citation: Tapawan, Sarah Jane Corpuz, Wang, Furene SJ, Lee, Ming Wei, Chun, Aaron QH, Lin, Jeremy BY, Han, Velda, Lim, Michael TC, Ong, Hian Tat, Tay, Stacey KH (2020-02). Perspectives on Palliative Care Among Duchenne Muscular Dystrophy Patients and Their Families in Singapore. ANNALS ACADEMY OF MEDICINE SINGAPORE 49 (2) : 72-77. ScholarBank@NUS Repository. https://doi.org/10.47102/annals-acadmedsg.2019163
Abstract: INTRODUCTION: With 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 METHODS: A 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. RESULTS: A 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. CONCLUSION: There 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.
Source Title: ANNALS ACADEMY OF MEDICINE SINGAPORE
URI: https://scholarbank.nus.edu.sg/handle/10635/245782
ISSN: 0304-4602
2972-4066
DOI: 10.47102/annals-acadmedsg.2019163
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