Oliver David, Barrick Andy, Kobylecki Christopher, Panicker Jalesh, Quinn Niall, Rushton Emma, Schrag Anette, Walker Karen, Bhatia Kailash
Tizard Centre, University of Kent, Canterbury, UK
Multiple System Atrophy Trust, London, UK.
BMJ Support Palliat Care. 2024 Dec 19;14(e3):e3019-e3023. doi: 10.1136/spcare-2024-005045.
People with multiple system atrophy (MSA) and their carers may have many concerns about their disease and the future. This survey of people with MSA and their carers aimed to increase understanding of end-of-life care and palliative care for this group.
A survey was undertaken by the MSA Trust of people living with MSA and carers of those with the condition between August and October 2022.
520 people responded: 215 people with MSA, 214 carers and 91 former carers. The modal class for age in people with MSA was 65-74 years, with 52% male. 76% of people living with MSA had thought to some extent about what they wanted to happen towards the end of their lives. 38% of respondents had discussed end-of-life care options with a healthcare professional and of those who had, over 81% found the conversation helpful. Nevertheless, for 37% of former carers, the death had been unexpected. Only a minority of people living with MSA had been referred for specialist palliative care. 65% of the former carers reported that they were satisfied with the quality of end-of-life care.
People with MSA and their carers continue to face many complex physical and emotional issues that would benefit from palliative care. Discussions about care at the end of life were generally perceived as helpful, but although the deterioration was often discussed, many families seemed unprepared for the death. Palliative care services were involved but this appeared limited.
多系统萎缩（MSA）患者及其照料者可能对自身疾病及未来存在诸多担忧。本次针对MSA患者及其照料者的调查旨在增进对该群体临终关怀和姑息治疗的理解。
MSA信托组织在2022年8月至10月期间对MSA患者及该病患者的照料者进行了一项调查。
520人做出了回应：215名MSA患者、214名照料者和91名 former carers。MSA患者的年龄众数类别为65 - 74岁，男性占52%。76%的MSA患者在一定程度上思考过他们希望在生命末期发生什么。38%的受访者与医疗保健专业人员讨论过临终护理选择，其中超过81%的人认为这种谈话有帮助。然而，对于37%的former carers来说，死亡是出乎意料的。只有少数MSA患者被转介接受专科姑息治疗。65%的former carers报告称他们对临终护理质量感到满意。
MSA患者及其照料者继续面临许多复杂的身体和情感问题，姑息治疗会对他们有益。关于临终护理的讨论通常被认为是有帮助的，但尽管经常讨论病情恶化情况，许多家庭似乎对死亡毫无准备。姑息治疗服务有所参与，但似乎有限。
