Department of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore.
Ann Acad Med Singap. 2020 Feb;49(2):72-77.
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.
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.
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.
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.
随着医疗水平的提高，杜氏肌营养不良症（DMD）患者的寿命延长，但面临着更复杂的医疗和社会需求。本研究描述了新加坡 DMD 患者及其家属对疾病特异性姑息治疗服务的看法。
进行了一项多中心、横断面研究，涉及 DMD 患者及其家属。对他们进行了结构化问卷调查，以收集有关他们对姑息治疗的理解、他们所获得的卫生服务以及他们所期望的服务和生活质量的数据。
共有 30 对 DMD 患者及其照顾者做出了回应。大多数患者年龄大于 13 岁（70%）且无法行走（86%）。他们中的大多数人和他们的家人（70%）也不知道新加坡提供的姑息治疗和支持服务。此外，他们认为更多的财政援助和更好的交通服务是可以更好地满足他们护理需求的资源。脊柱侧凸的存在和通气支持的需求与患者生活质量较低有关。
在新加坡，需要提高对 DMD 患者姑息治疗服务的认识和提供，因为在这里，讨论临终关怀通常被认为是禁忌。预防和纠正脊柱侧凸并提供适当的通气支持可能会提高 DMD 患者的生活质量。
