End-of-life care in multiple system atrophy: UK survey of patients and families
Author Information
Author(s): Oliver David, Barrick Andy, Kobylecki Christopher, Panicker Jalesh, Quinn Niall, Rushton Emma, Schrag Anette, Walker Karen, Bhatia Kailash
Primary Institution: Multiple System Atrophy Trust, London, UK
Hypothesis
This survey aimed to increase understanding of end-of-life care and palliative care for people with multiple system atrophy (MSA) and their carers.
Conclusion
People with MSA and their carers face many complex physical and emotional issues that would benefit from palliative care.
Supporting Evidence
- 76% of people living with MSA had thought 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.
- 65% of former carers reported satisfaction with the quality of end-of-life care.
Takeaway
This study asked people with a disease called multiple system atrophy and their caregivers about their end-of-life care. Many wanted to talk about it, but not everyone got the help they needed.
Methodology
A survey was conducted among people living with MSA and their carers between August and October 2022.
Limitations
The response rate was only 27%, which may limit the generalizability of the findings.
Participant Demographics
The modal age for people with MSA was 65–74 years, with 52% male and 98% identifying as white.
Digital Object Identifier (DOI)
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