Musson, LS;
Collins, A;
Opie-Martin, S;
Bredin, A;
Hobson, EV;
Barkhouse, E;
Coulson, MC;
... McDermott, CJ; + view all
(2022)
Impact of the Covid-19 Pandemic on ALS Care in the UK.
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
10.1080/21678421.2022.2040533.
(In press).
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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.
| Type: | Article |
|---|---|
| Title: | Impact of the Covid-19 Pandemic on ALS Care in the UK |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1080/21678421.2022.2040533 |
| Publisher version: | https://doi.org/10.1080/21678421.2022.2040533 |
| Language: | English |
| Additional information: | © 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
| Keywords: | amyotrophic lateral sclerosis, motor neuron disease, Covid-19, healthcare services, thematic analysis |
| UCL classification: | 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 > Division of Psychiatry UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10143175 |
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