Abstract
Background: 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.Aim: 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.Methods: 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).Results: 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.Conclusions: 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.
Highlights
In the context of the COVID-19 pandemic, the constant needs of people with multiple sclerosis (PwMS) and their caregivers were urgently highlighted, while ways of more effective management of these needs are extensively investigated [1, 2]
The present study aims to capture the effects of the COVID19 pandemic in several aspects of the quality of life, perception, and behavior in relation to COVID-19 and MS, as well as in the healthcare, working conditions, and willingness toward COVID19 vaccination of PwMS, by implementing two online available, self-administered questionnaires
The HEL.A.NI. initiative has been included in the MS Data Alliance (MSDA) Catalog and the vaccination questionnaire was used in the mapping exercise of COVID-19 vaccine protocols recently performed by the MSDA to support the alignment in updating COVID-19 in MS surveys and data collections, thereby aiming to facilitate collaborative research between initiatives [23]
Summary
In the context of the COVID-19 pandemic, the constant needs of people with multiple sclerosis (PwMS) and their caregivers were urgently highlighted, while ways of more effective management of these needs are extensively investigated [1, 2]. Several scientific organizations are recommending alterations in the management of multiple sclerosis (MS) [3,4,5] These changes aim to minimize the direct interaction of patients with the health system, reducing the risk of exposure and infection with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) [6, 7]. 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
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