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

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.

European Academy of Neurology 2019 ‐ 2022

“…• Together with the EFNA, the EAN developed the OneNeurology campaign, which included several activities (e.g., events and surveys) to raise the public awareness on the burden of neurological disorders and to make neurology a global public health priority [12].…”

“…In the past 3 years, new initiatives have been started including the following: Together with the EFNA, the EAN developed the OneNeurology campaign, which included several activities (e.g., events and surveys) to raise the public awareness on the burden of neurological disorders and to make neurology a global public health priority [12]. The EAN supported (e.g., with a joint communiqué signed by 42 presidents of European national neurological societies) the development by the WHO Brain Health Unit of the Global Action Plan on epilepsy and other neurological disorders (GAP).…”

Neurointensivmedizin und COVID-19

“…Neben den oben diskutierten möglichen direkten und indirekten Auswirkungen auf die Gesundheit sind im Rahmen der Pandemie eine Reihe von „Kollateralschäden“ entstanden. Hierunter fallen unter anderem eine mangelhafte Betreuung chronisch Kranker, eine verzögerte Vorstellung akut kranker Patienten sowie die Einschränkungen in Weiterbildung und Forschung [ 5 , 36 ].…”

Einblicke in die Behandlung der Multiplen Sklerose mit Cladribin-Tabletten seit Beginn der COVID-19-Pandemie

“…Die Verunsicherung bei Betroffenen, Angehörigen und Behandlern zu Beginn der Pandemie war groß, da erst einmal das potenzielle Risiko, per se aufgrund der MS an COVID-19 zu erkranken, geklärt werden musste [ 6 , 7 ]. Dieser Gedankengang ist nicht unbegründet, liegt doch ein erhöhtes Risiko für Infektionen bei MS-Erkrankten vor [ 8 ].…”