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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; McDermott, Christopher J.
  • Musson LS; Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, United Kingdom.
  • Collins A; Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, United Kingdom.
  • Opie-Martin S; Department of Basic and Clinical Neuroscience, King's College London, London, United Kingdom.
  • Bredin A; Department of Basic and Clinical Neuroscience, King's College London, London, United Kingdom.
  • Hobson EV; Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, United Kingdom.
  • Barkhouse E; Department of Medicine, The University of Sheffield, Sheffield, United Kingdom.
  • Coulson MC; School of Psychology, University of East Anglia, Norwich, United Kingdom, and.
  • Stavroulakis T; Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, United Kingdom.
  • Gould RL; Division of Psychiatry, University College London, London, United Kingdom.
  • Al-Chalabi A; Department of Basic and Clinical Neuroscience, King's College London, London, United Kingdom.
  • McDermott CJ; Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, United Kingdom.
Amyotroph Lateral Scler Frontotemporal Degener ; : 1-9, 2022 Feb 22.
Article in English | MEDLINE | ID: covidwho-2233603
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.
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Full text: Available Collection: International databases Database: MEDLINE Type of study: Experimental Studies / Observational study / Prognostic study / Qualitative research Language: English Journal: Amyotroph Lateral Scler Frontotemporal Degener Year: 2022 Document Type: Article Affiliation country: 21678421.2022.2040533

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Full text: Available Collection: International databases Database: MEDLINE Type of study: Experimental Studies / Observational study / Prognostic study / Qualitative research Language: English Journal: Amyotroph Lateral Scler Frontotemporal Degener Year: 2022 Document Type: Article Affiliation country: 21678421.2022.2040533