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Lessons learned from people with neurological diseases at the time of COVID‐19: The EFNA‐EAN survey.

Authors :
Bodini, Benedetta
Moro, Elena
Jaarsma, Joke
Cunningham, Elizabeth
Sellner, Johann
Walsh, Donna
Bassetti, Claudio L.
Beghi, Ettore
Bereczki, Daniel
Burlica, Anja
Cavallieri, Francesco
Crean, Michael
Di Liberto, Giovanni
Helbok, Raimund
Jenkins, Thomas M.
Macerollo, Antonella
Maia, Luis F.
Oreja‐Guevara, Celia
Özturk, Serefnur
Rakusa, Martin
Source :
European Journal of Neurology. Jan2022, Vol. 29 Issue 1, p318-323. 6p.
Publication Year :
2022

Abstract

Background and purpose: The European Federation of Neurological Associations (EFNA), in partnership with the NeuroCOVID‐19 taskforce of the European Academy of Neurology (EAN), has investigated the impact of the first wave of the COVID‐19 pandemic on individuals with neurological diseases, as well as the hopes and fears of these patients about the post‐pandemic phase. Methods: An EFNA‐EAN survey was available online to any person living with a neurological disorder in Europe. It consisted of 18 items concerning the impact of the first wave of the COVID‐19 pandemic on the medical care of people with neurological disorders, and the hopes and fears of these individuals regarding the post‐pandemic phase. Results: For 44.4% of the 443 survey participants, the overall care of their neurological disease during the pandemic was inappropriate. This perception was mainly due to significant delays in accessing medical care (25.7%), insufficiently reliable information received about the potential impact of COVID‐19 on their neurological disease (49.6%), and a substantial lack of involvement in their disease management decisions (54.3%). Participants indicated that their major concerns for the post‐pandemic phase were experiencing longer waiting times to see a specialist (24.1%), suffering from social isolation and deteriorating mental well‐being (23.1%), and facing delays in clinical trials with disinvestment in neuroscience research (13.1%). Conclusions: Despite the great efforts of health services to cope with the first wave of the COVID‐19 pandemic, individuals with neurological conditions feel they have been left behind. These findings provide invaluable insights for improving the care of patients with neurological disorders in the further course of the COVID‐19 pandemic. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
13515101
Volume :
29
Issue :
1
Database :
Academic Search Index
Journal :
European Journal of Neurology
Publication Type :
Academic Journal
Accession number :
154044601
Full Text :
https://doi.org/10.1111/ene.15087