Lessons learned from people with neurological diseases at the time of COVID‐19: The EFNA‐EAN survey. (5th October 2021)

• Record Type: Journal Article
• Authors: Bodini, Benedetta; Moro, Elena; Jaarsma, Joke; Cunningham, Elizabeth; Sellner, Johann; Walsh, Donna
• Other Names: Bassetti Claudio L. investigator.; Beghi Ettore investigator.; Bereczki Daniel investigator.; Bodini Benedetta investigator.; Burlica Anja investigator.; Cavallieri Francesco investigator.; Crean Michael investigator.; Di Liberto Giovanni investigator.; Helbok Raimund investigator.; Jenkins Thomas M. investigator.; Macerollo Antonella investigator.; Maia Luis F. investigator.; Moro Elena investigator.; Oreja‐Guevara Celia investigator.; Özturk Serefnur investigator.; Rakusa Martin investigator.; Sauerbier Anna investigator.; Sellner Johann investigator.; Soffietti Riccardo investigator.; Taba Pille investigator.; Pisani Antonio investigator.; Priori Alberto investigator.; von Oertzen Tim J. investigator.; Zedde Marialuisa investigator.
• Is Part Of: European journal of neurology. Volume 29:Number 1(2022)
• Page Start: 318
• Page End: 323
• Publication Date: 2021-10-05
• Subjects: chronic disorders -- COVID‐19 -- medical care -- neurology -- people with neurological disease -- perspective -- survey; Neurology -- Periodicals; Nervous system -- Diseases -- Periodicals; 616.8
• DOI: 10.1111/ene.15087
• Languages: English
• ISSNs: 1351-5101

Abstract

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 : For 44.4% of individuals with neurological disorders participating in the survey, the overall care of their neurological disease during the pandemic was inappropriate due to significant delays in accessing medical care, insufficient information about the potential impact of COVID‐19 on their neurological disease, and a lack of involvement in their disease management decisions. Survey participants indicated that their major concerns for the post‐pandemic phase were experiencing longer waiting times to see a specialist, suffering from social isolation and deteriorating mental well‐being, and facing delays in clinical trials. Overall, despite the great efforts of health services to cope with the first wave of the COVID‐19 pandemic, people with neurological disorders feel they have been left behind.