Impact of the covid-19 pandemic on amyotrophic lateral sclerosis care in the UK

Musson, Lucy S., Collins, Alexis, Opie-Martin, Sarah, Bredin, Andrea, Hobson, Esther V., Barkhouse, Emily, Coulson, Mark C., Stavroulakis, Theocharis, Gould, Rebecca L., Al-Chalabi, Ammar and McDermott, Christopher J. (2022) Impact of the covid-19 pandemic on amyotrophic lateral sclerosis care in the UK. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. ISSN 2167-8421

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Abstract

The Covid-19 pandemic has impacted healthcare. Our aim was to identify how amyotrophic lateral sclerosis (ALS) care in the UK has been affected by the pandemic by exploring the experiences of people living with ALS (plwALS), healthcare professionals (HCPs) working with plwALS, and ALS care centers. Three surveys were carried out to explore the experiences of plwALS, HCPs and ALS care centers during the pandemic. Quantitative data were analyzed using descriptive and inferential statistics and triangulated with the qualitative data which were analyzed thematically. Responses from 53 plwALS, 73 HCPs and 23 ALS care centers were analyzed. Five main themes were identified: keeping safe, losses, negative emotions, delivering care and alternative care delivery in a pandemic. PlwALS and HCPs felt that care was sub-optimal as a result of the pandemic. Changes to care included longer waiting times and face-to-face appointments being canceled or replaced by virtual consultations. While benefits of virtual consultations were reported, concerns were raised about incomplete clinical assessments and the disruption of provision of testing and interventions. ALS care has changed as a result of the pandemic. Patients have had a lack of face-to-face contact with HCPs and have experienced delays to investigations and treatments. PlwALS and HCPs were concerned about the impact of this change, but the long-term implications remain unclear. We propose recommendations for HCPs caring for plwALS, that will promote continuity of evidenced based care in the context of a pandemic.

Item Type: Article
Additional Information: Funding Information: AC was supported by the My Name’5 Doddie Foundation. CJM is supported by the NIHR Biomedical Research Centre Sheffield and is an NIHR Research Professor. AAC is an NIHR Senior Investigator (NIHR202421). This is in part an EU Joint Programme - Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organisations under the aegis of JPND - www.jpnd.eu (United Kingdom, Medical Research Council (MR/L501529/1; MR/R024804/1) and Economic and Social Research Council (ES/L008238/1)) and through the Motor Neurone Disease Association. This study represents independent research part-funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. Publisher Copyright: © 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Uncontrolled Keywords: amyotrophic lateral sclerosis,covid-19,healthcare services,motor neuron disease,thematic analysis,neurology,clinical neurology ,/dk/atira/pure/subjectarea/asjc/2800/2808
Faculty \ School: Faculty of Social Sciences > School of Psychology
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Depositing User: LivePure Connector
Date Deposited: 12 Oct 2022 09:35
Last Modified: 25 Oct 2022 10:31
URI: https://ueaeprints.uea.ac.uk/id/eprint/89007
DOI: 10.1080/21678421.2022.2040533

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