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. 2022 Jan;29(1):318-323.
doi: 10.1111/ene.15087. Epub 2021 Oct 5.

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

Benedetta Bodini  1   2 , Elena Moro  3 , Joke Jaarsma  4 , Elizabeth Cunningham  4 , Johann Sellner  5 , Donna Walsh  4 ; EANcore COVID-19 Task Force
Collaborators, Affiliations

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

Benedetta Bodini et al. Eur J Neurol. 2022 Jan.

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.

Keywords: COVID-19; chronic disorders; medical care; neurology; people with neurological disease; perspective; survey.

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Conflict of interest statement

E. Moro is the Secretary General of the EAN. J. Sellner is the Co‐Chair of EAN Infectious Disease Panel.

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