Abstract
Background and Objectives To evaluate the effects of the coronavirus disease 2019 (COVID-19) pandemic on the life of patients with neuromyelitis optica spectrum disorders (NMOSD) and myelin oligodendrocyte glycoprotein antibody–associated diseases (MOGAD).
Methods This multicenter, cross-sectional study included data of 187 patients recruited from 19 different German and Austrian Neuromyelitis Optica Study Group (NEMOS) centers between July 2021 and March 2022. The effects of the pandemic on immunotherapeutic treatment and access to care, the possible severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, and the potential effect of vaccination against SARS-CoV-2 on disease incidence and relapse risk were assessed using a patient questionnaire. Health-related quality of life (HRQoL) was measured with the EuroQoL Group 5-Dimension 5-Level Scale (EQ-5D-5L). Demographic and clinical characteristics were retrieved from the NEMOS database.
Results One hundred eighty-seven patients (75% women; median age 47 [range 21–86] years; median disease duration 5.5 [range 0–67] years; median Expanded Disability Status Scale 2.0 [range 0–8.0]; 51% aquaporin-4 immunoglobulin G (AQP4-IgG)-positive, 36% myelin oligodendrocyte glycoprotein (MOG)-IgG-positive 13% double-seronegative) were analyzed. Most patients maintained excellent access to healthcare services throughout the pandemic. Immunotherapy was not changed in 88% of patients. Ninety-one percent of all patients were satisfied with medical care during the pandemic. Nearly two-thirds (64%) of patients rated their risk of infection with SARS-CoV-2 as low or moderate. Among this study sample, 23 patients (12%) knowingly acquired an infection with SARS-CoV-2 and predominantly had a nonsevere course of illness (n = 22/23, 96%). The SARS-CoV-2 vaccination rate was 89%, with 4 cases of confirmed attack or first manifestation of NMOSD/MOGAD occurring in temporal association with the vaccination (range 2–9 days). The reported HRQoL did not decline compared with a prepandemic assessment (mean EQ-5D-5L index value 0.76, 95% bootstrap confidence interval [CI] 0.72–0.80; mean EQ-VAS 66.5, 95% bootstrap CI 63.5–69.3).
Discussion This study demonstrates that, overall, patients with NMOSD/MOGAD affiliated with specialized centers received ongoing medical care during the pandemic. Patients' satisfaction with medical care and HRQoL did not decrease.
Glossary
- ADEM=
- acute disseminated encephalomyelitis;
- AQP4-IgG=
- aquaporin-4 immunoglobulin G;
- EDSS=
- Expanded Disability Status Scale;
- EQ-5D-5L=
- EuroQoL Group 5-Dimension 5-Level Scale;
- HRQoL=
- health-related quality of life;
- IVIG=
- IV immunoglobulin;
- MOG-IgG=
- myelin oligodendrocyte glycoprotein immunoglobulin G;
- MOGAD=
- myelin oligodendrocyte glycoprotein antibody–associated diseases;
- mRNA=
- messenger RNA;
- NEMOS=
- Neuromyelitis Optica Study Group;
- NMOSD=
- neuromyelitis optica spectrum disorders
Footnotes
Go to Neurology.org/NN for full disclosures. Funding information is provided at the end of the article.
The Article Processing Charge was funded by the authors.
Neuromyelitis Optica Study Group (NEMOS) coinvestigators are listed in the appendix at the end of the article.
Submitted and externally peer reviewed. The handling editor was Editor Josep O. Dalmau, MD, PhD, FAAN.
↵* These authors contributed equally to this work.
COVID-19 Resources: NPub.org/COVID19
- Received September 16, 2022.
- Accepted in final form November 16, 2022.
- Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.
This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND), which permits downloading and sharing the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.
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