eprintid: 10143175 rev_number: 15 eprint_status: archive userid: 699 dir: disk0/10/14/31/75 datestamp: 2022-02-09 10:25:54 lastmod: 2022-07-06 13:08:56 status_changed: 2022-07-06 13:08:56 type: article metadata_visibility: show sword_depositor: 699 creators_name: Musson, LS creators_name: Collins, A creators_name: Opie-Martin, S creators_name: Bredin, A creators_name: Hobson, EV creators_name: Barkhouse, E creators_name: Coulson, MC creators_name: Stavroulakis, T creators_name: Gould, Rebecca creators_name: Al-Chalabi, A creators_name: McDermott, CJ title: Impact of the Covid-19 Pandemic on ALS Care in the UK ispublished: inpress divisions: C07 divisions: D79 divisions: B02 divisions: UCL keywords: amyotrophic lateral sclerosis, motor neuron disease, Covid-19, healthcare services, thematic analysis note: © 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. 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. date: 2022-12-31 date_type: published publisher: Taylor & Francis official_url: https://doi.org/10.1080/21678421.2022.2040533 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 1938453 doi: 10.1080/21678421.2022.2040533 lyricists_name: Gould, Rebecca lyricists_id: RLGOU05 actors_name: Gould, Rebecca actors_id: RLGOU05 actors_role: owner full_text_status: public publication: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration citation: Musson, LS; Collins, A; Opie-Martin, S; Bredin, A; Hobson, EV; Barkhouse, E; Coulson, MC; ... McDermott, CJ; + view all <#> Musson, LS; Collins, A; Opie-Martin, S; Bredin, A; Hobson, EV; Barkhouse, E; Coulson, MC; Stavroulakis, T; Gould, Rebecca; Al-Chalabi, A; McDermott, CJ; - view fewer <#> (2022) Impact of the Covid-19 Pandemic on ALS Care in the UK. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 10.1080/21678421.2022.2040533 <https://doi.org/10.1080/21678421.2022.2040533>. (In press). Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10143175/9/Gould_21678421.2022.pdf