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Support needs of people with Multiple System Atrophy

Cheong, Julia LY; Goh, Zhao HK; Schrag, Anette; (2024) Support needs of people with Multiple System Atrophy. Parkinsonism and Related Disorders , 120 , Article 106019. 10.1016/j.parkreldis.2024.106019. Green open access

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Abstract

Background: Multiple system atrophy (MSA) is a neurodegenerative disease with presentations including parkinsonism, autonomic disturbances, gait impairment and mood disorders. The progressive nature of MSA results in a significant deterioration in quality of life for patients. // Objectives: To investigate the needs of people with MSA (PwMSA) in the United Kingdom (UK) and the support provided to them. // Methods: A survey of members of the UK's MSA Trust including PwMSA and former carers explored questions on the physical, emotional, personal and financial impact of MSA and on support received. // Results: There were 284 valid responses from PwMSA and 371 responses from former carers. Difficulties with movement were universally experienced by PwMSA. The majority of former carers reported these as difficult or very difficult to manage (90 %), followed by autonomic problems (85 %) and breathing, speech or swallowing problems (81 %). PwMSA also reported fatigue (96 %), mood disorders (80 %) and social isolation (82 %). 41 % of former carers felt that the emotional needs of PwMSA had not been met. Many also reported inadequately covered financial needs (48 %). Equipment used most commonly included mobility equipment (90 %). The majority received support from neurologists (95 %) and GPs (92 %), but few from palliative care or mental health professionals. Satisfaction was highest for support from palliative services (95 %) and specialist nurses (91 %). // Conclusion: This survey demonstrates the high burden of MSA across various aspects of life for PwMSA. It suggests that whilst there is good provision of neurology services and physical equipment, there is a need to improve support for their emotional and social needs.

Type: Article
Title: Support needs of people with Multiple System Atrophy
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.parkreldis.2024.106019
Publisher version: http://dx.doi.org/10.1016/j.parkreldis.2024.106019
Language: English
Additional information: Copyright © 2024 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
Keywords: Multiple system atrophy; Caregiver experience; Quality of life; Caregiving; Carers; Support needs
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical and Movement Neurosciences
URI: https://discovery.ucl.ac.uk/id/eprint/10187293
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