72 Copyright © 2020 Annals, Academy of Medicine, Singapore Perspectives on Palliative Care Among Duchenne Muscular Dystrophy Patients and Their Families in Singapore Sarah Jane Corpuz Tapawan, 1 MD, MRCPCH (UK), Furene SJ Wang, 2 MBBS, MMed (Paeds), MRCPCH (UK), Ming Wei Lee, 1 MBBS, MMed (Paeds), MRCPCH (UK), Aaron QH Chua, 1 MBBS, MMed (Int Med), MRCP (UK), Jeremy BY Lin, 2 MBBS, MMed (Paeds), MRCPCH (UK), Velda Han, 2 MBBS, MMed (Paeds), MRCPCH (UK), Michael TC Lim, 2 MBBS, FRCPCH (UK), FCCP (USA), Hian Tat Ong, 2 MBBS, MMed (Paeds), Stacey KH Tay, 1,2 MBBS, MMed (Paeds), FRCPCH (UK) 1 Department of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore 2 Khoo Teck Puat-National University Children’s Medical Institute, National University Health System, Singapore Address for Correspondence: Dr Sarah Jane Corpuz Tapawan, Unit 9 45-49 Harbourne Road, Kingsford, NSW 2032, Australia. Email: janesa0301@gmail.com Introduction Duchenne muscular dystrophy (DMD) is an X-linked, progressive neuromuscular disorder that causes loss of mobility and comorbidities including cardiomyopathy, contractures, respiratory insufficiency, scoliosis and eventual loss of ability to care for oneself. 1,2 Despite advances in medicine, DMD remains incurable. 3 Without non-invasive ventilation (NIV), mean age of death in DMD patients in the past was 14.4 years (95% confidence interval, 11.9–16.82 years). 4 However, nocturnal ventilation has improved the likelihood of survival of up to 25 years in DMD patients. 4 In the late stage of the disease, DMD patients are typically wheelchair-bound, on NIV support and dependent on others for their care. Their nutritional status is also greatly compromised from progressive swallowing dysfunction and they experience pain from scoliosis and contractures with poor sleep. 5–7 Beyond the direct costs incurred by DMD patients for medical intervention, the impact of the disease on their caregivers and families can be huge since their extensive health needs can cause much emotional, financial and psychological stress on their resources and coping abilities. 8,9 Increasingly, as DMD patients enjoy longer life expectancy, it means that the duration of nutritional, physical and social issues that significantly impact their quality of life has been extended. Consequently, efforts to destigmatise and effect a change in the perceptions of the general population of palliative care as “giving up hope” still remains very much a work in progress. Poor awareness of “palliative care” in DMD patients and even health professionals Palliative Care in DMD Patients—Sarah Jane Corpuz Tapawan et al Original Article 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. Ann Acad Med Singapore 2020;49:72–7 Key words: Advance care planning, Palliative support services, Quality of life Click HERE for more articles at Annals, Academy of Medicine, Singapore homepage