Oliver, David J., Barrick, Andy, Kobylecki, Christopher, Panicker, Jalesh, Quinn, Niall, Rushton, Emma, Schrag, Anette, Walker, Karen, Bhatia, Kailash (2024) End-of-life care in multiple system atrophy: UK survey of patients and families. BMJ Supportive & Palliative Care, . ISSN 2045-435X. (doi:10.1136/spcare-2024-005045) (KAR id:107009)
PDF
Publisher pdf
Language: English
This work is licensed under a Creative Commons Attribution 4.0 International License.
|
|
Download this file (PDF/296kB) |
Preview |
Request a format suitable for use with assistive technology e.g. a screenreader | |
Official URL: https://doi.org/10.1136/spcare-2024-005045 |
Abstract
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.
Item Type: | Article |
---|---|
DOI/Identification number: | 10.1136/spcare-2024-005045 |
Uncontrolled keywords: | Chronic conditions, Quality of life, Terminal care, Advance Directives, Palliative Care |
Subjects: | H Social Sciences |
Divisions: | Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Tizard |
Funders: | University of Kent (https://ror.org/00xkeyj56) |
SWORD Depositor: | JISC Publications Router |
Depositing User: | JISC Publications Router |
Date Deposited: | 11 Oct 2024 14:24 UTC |
Last Modified: | 05 Nov 2024 13:12 UTC |
Resource URI: | https://kar.kent.ac.uk/id/eprint/107009 (The current URI for this page, for reference purposes) |
- Link to SensusAccess
- Export to:
- RefWorks
- EPrints3 XML
- BibTeX
- CSV
- Depositors only (login required):