Bodini Benedetta, Moro Elena, Jaarsma Joke, Cunningham Elizabeth, Sellner Johann, Walsh Donna
Paris Brain Institute, Sorbonne University, Paris, France.
Department of Neurology, Saint-Antoine Hospital, APHP, Paris, France.
Eur J Neurol. 2022 Jan;29(1):318-323. doi: 10.1111/ene.15087. Epub 2021 Oct 5.
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.
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.
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%).
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.
欧洲神经学协会联合会（EFNA）与欧洲神经病学学会（EAN）的NeuroCOVID-19特别工作组合作，调查了新冠疫情第一波对神经系统疾病患者的影响，以及这些患者对疫情后阶段的希望与担忧。
EFNA-EAN调查在网上向欧洲任何患有神经系统疾病的人开放。它包括18个项目，涉及新冠疫情第一波对神经系统疾病患者医疗护理的影响，以及这些患者对疫情后阶段的希望与担忧。
在443名调查参与者中，44.4%的人认为疫情期间其神经系统疾病的总体护理不合适。这种看法主要是由于就医严重延迟（25.7%）、收到的关于新冠疫情对其神经系统疾病潜在影响的信息不够可靠（49.6%）以及在疾病管理决策中严重缺乏参与度（54.3%）。参与者表示，他们对疫情后阶段的主要担忧是看专科医生的等待时间更长（24.1%）、遭受社会隔离和心理健康恶化（23.1%），以及面临临床试验延迟和神经科学研究资金投入减少（13.1%）。
尽管卫生服务部门为应对新冠疫情第一波做出了巨大努力，但神经系统疾病患者觉得自己被落下了。这些发现为在新冠疫情后续过程中改善神经系统疾病患者的护理提供了宝贵的见解。
