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希腊神经免疫学学会(HEL.A.NI.)关于新冠病毒肺炎和多发性硬化症的全国代表性横断面研究:总体影响及接种意愿

A National Representative, Cross-Sectional Study by the Hellenic Academy of NeuroImmunology (HEL.A.NI.) on COVID-19 and Multiple Sclerosis: Overall Impact and Willingness Toward Vaccination.

作者信息

Boziki Marina, Styliadis Charis, Bakirtzis Christos, Grigoriadou Eleni, Sintila Aggeliki-Styliani, Nikolaidis Ioannis, Vrienniou Aliki, Geys Lotte, Pelidou Sygkliti-Henrietta, Probert Lesley, Papazisis Georgios, Bamidis Panagiotis, Grigoriadis Nikolaos

机构信息

2nd Neurological University Department, Aristotle University of Thessaloniki, American Hellenic Educational and Progressive Association (AHEPA) General Hospital, Thessaloniki, Greece.

Hellenic Academy of NeuroImmunology (HEL.A.NI.), Thessaloniki, Greece.

出版信息

Front Neurol. 2021 Nov 25;12:757038. doi: 10.3389/fneur.2021.757038. eCollection 2021.

Abstract

In the context of the coronavirus disease 2019 (COVID-19) pandemic, the constant needs of people with multiple sclerosis (PwMS) and their caregivers were urgently highlighted. The present study aims to capture the effects of the COVID-19 pandemic in several aspects of the quality of life of PwMS, in perception and behavior to COVID-19 and multiple sclerosis (MS), as well as concerning healthcare, working conditions, and the willingness toward COVID-19 vaccination. This study is an initiative of the Hellenic Academy of Neuroimmunology (HEL.A.NI.) and it has been included in the MS Data Alliance (MSDA) Catalog, which can be accessed after creating an account on https://msda.emif-catalogue.eu/login. Two online questionnaires were administered: (i) impact of the COVID-19 pandemic on the quality of life, behavior, and healthcare of PwMS (Questionnaire A) and (ii) vaccination against COVID-19 (Questionnaire B). People with MS were invited to participate by the Hellenic Federation of Persons with Multiple Sclerosis (HFoPwMS). Three-hundred-ninety PwMS responded to Questionnaire A, whereas 176 PwMS provided answers for Questionnaire B. Older age, longer disease duration, and higher MS-related disability were associated with the increased perceived sensitivity toward severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, as well as the increased perceived severity of COVID-19 upon potential infection. A significant proportion of PwMS experienced restricted access to MS-related health professionals, disease-modifying therapy (DMT) prescription, and/or to MS-related laboratory examination due to the pandemic. Subgroups of PwMS reported exacerbated symptoms (i.e., chronic MS-related symptoms, fatigue and/or worsening of pre-existing fatigue, and sexual dysfunction and or/worsening of pre-existing sexual dysfunction). Overall, the majority of the participants reported either a strong willingness to get vaccinated against COVID-19 or a likeliness to undergo vaccination. Being aware of the HEL.A.NI. recommendations regarding COVID-19 vaccination for PwMS were reported to increase the willingness of the participants to receive the vaccine. Our results highlight the necessity of scientific and patient organizations in taking joint action to increase awareness on health-related issues during the pandemic and to provide accurate and up-to-date guidance for PwMS. Online information and communications technology (ICT) tools for polling public belief and behavior may prove valuable as means of retaining active routes of communication between stakeholders.

摘要

在2019冠状病毒病(COVID-19)大流行的背景下,多发性硬化症患者(PwMS)及其护理人员的持续需求被紧急凸显出来。本研究旨在了解COVID-19大流行对PwMS生活质量的多个方面、对COVID-19和多发性硬化症(MS)的认知及行为、以及医疗保健、工作条件和COVID-19疫苗接种意愿的影响。本研究由希腊神经免疫学学会(HEL.A.NI.)发起,并已被纳入MS数据联盟(MSDA)目录,在https://msda.emif-catalogue.eu/login上创建账户后即可访问该目录。发放了两份在线问卷:(i)COVID-19大流行对PwMS生活质量、行为和医疗保健的影响(问卷A)和(ii)COVID-19疫苗接种情况(问卷B)。希腊多发性硬化症患者联合会(HFoPwMS)邀请MS患者参与。390名PwMS对问卷A做出了回应,而176名PwMS提供了问卷B的答案。年龄较大、病程较长以及MS相关残疾程度较高与对严重急性呼吸综合征冠状病毒2(SARS-CoV-2)感染的感知敏感性增加以及潜在感染时对COVID-19的感知严重程度增加有关。由于大流行,相当一部分PwMS在获得与MS相关的医疗专业人员服务、疾病修正治疗(DMT)处方和/或MS相关实验室检查方面受到限制。PwMS亚组报告症状加重(即慢性MS相关症状、疲劳和/或既往疲劳加重,以及性功能障碍和/或既往性功能障碍恶化)。总体而言,大多数参与者报告要么强烈愿意接种COVID-19疫苗,要么有可能接受疫苗接种。据报告,了解HEL.A.NI.关于PwMS接种COVID-19疫苗的建议会增加参与者接种疫苗的意愿。我们的结果强调了科学组织和患者组织联合行动的必要性,以提高大流行期间对健康相关问题的认识,并为PwMS提供准确和最新的指导。用于调查公众信念和行为的在线信息和通信技术(ICT)工具可能被证明是保持利益相关者之间积极沟通渠道的宝贵手段。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/696b/8656423/4d9ec14ee0f7/fneur-12-757038-g0001.jpg

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