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March 2023; 10 (2) Research ArticleOpen Access

Effects of the COVID-19 Pandemic on Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Diseases

COPANMO(G)-Study

Martin W. Hümmert, Franziska Bütow, Daria Tkachenko, Ilya Ayzenberg, Thivya Pakeerathan, Kerstin Hellwig, Luisa Klotz, Vivien Häußler, Jan-Patrick Stellmann, Clemens Warnke, Yasemin Goereci, Thorleif Etgen, Felix Luessi, Paul Bronzlik, Stefan Gingele, Ann-Sophie Lauenstein, Ingo Kleiter, Paulus S. Rommer, Friedemann Paul, Judith Bellmann-Strobl, Ankelien Duchow, Florian Then Bergh, Refik Pul, Annette Walter, Hannah Pellkofer, Tania Kümpfel, Mosche Pompsch, Markus Kraemer, Philipp Albrecht, Orhan Aktas, Marius Ringelstein, Makbule Senel, Katrin Giglhuber, Achim Berthele, Sven Jarius, Brigitte Wildemann, Corinna Trebst; on behalf of Neuromyelitis Optica Study Group (NEMOS)
First published January 24, 2023, DOI: https://doi.org/10.1212/NXI.0000000000200082
Martin W. Hümmert
From the Department of Neurology (M.W.H., F.B., D.T., S.G., C.T.), Hannover Medical School, Germany; Department of Neurology (I.A., T.P., K.H., I.K.), St. Josef Hospital, Ruhr University Bochum, Germany; Department of Neurology (L.K.), University of Münster, Germany; Department of Neurology and Institute of Neuroimmunology and MS (INIMS) (V.H., J.-P.S.), University Medical Center Hamburg-Eppendorf, Germany; Aix-Marseille Univ (J.-P.S.), CNRS, CRMBM, UMR 7339, Marseille Cedex, France; APHM (J.-P.S.), Hopital de La Timone, CEMEREM, Marseille, France; Department of Neurology (C.W., Y.G.), Faculty of Medicine and University Hospital Cologne, University of Cologne, Germany; Department of Neurology (T.E.), Kliniken Südostbayern-Klinikum Traunstein, Germany; Department of Neurology (F.L.), University Medical Center of the Johannes Gutenberg University Mainz, Germany; Hannover Medical School (P.B.), Department of Diagnostic and Interventional Neuroradiology, Germany; Department of Neurology (A.-S.L.), German Diagnostic Clinic, DKD Helios Clinic Wiesbaden, Germany; Marianne-Strauß-Klinik (I.K.), Behandlungszentrum Kempfenhausen für Multiple Sklerose Kranke, Berg, Germany; Department of Neurology (P.S.R.), Medical University of Vienna, Austria; Experimental and Clinical Research Center (F.P., J.B.-S., A.D.), a Cooperation Between the Max Delbrück Center for Molecular Medicine in the Helmholtz Association and Charité Universitätsmedizin Berlin, Germany; Department of Neurology (F.P., J.B.-S., A.D.), Charité–Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Experimental and Clinical Research Center, Germany; Max Delbrück Center for Molecular Medicine in the Helmholtz Association (MDC) (F.P., J.B.-S., A.D.), Berlin, Germany; Department of Neurology (F.T.B.), University of Leipzig, Germany; Department of Neurology (R.P.), University of Essen, Germany; Department of Neurology (A.W.), Herford Hospital, Germany; Institute of Clinical Neuroimmunology (H.P., T.K.), LMU Hospital, Ludwig-Maximilians Universität München, Germany; Department of Neurology (M.P., M.K.), Alfried-Krupp-Krankenhaus Essen, Germany; Department of Neurology (M.K., P.A., O.A., M.R.), Medical Faculty, Heinrich Heine University Düsseldorf, Germany; Department of Neurology (M.R.), Center for Neurology and Neuropsychiatry, LVR-Klinikum, Heinrich Heine University Düsseldorf, Germany; Department of Neurology (M.S.), University of Ulm, Germany; Department of Neurology (K.G., A.B.), School of Medicine, Technical University Munich, Klinikum Rechts der Isar, Germany; and Molecular Neuroimmunology Group (S.J., B.W.), Department of Neurology, University of Heidelberg, Germany.
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Franziska Bütow
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Daria Tkachenko
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Ilya Ayzenberg
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Thivya Pakeerathan
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Kerstin Hellwig
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Luisa Klotz
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Vivien Häußler
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Jan-Patrick Stellmann
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Clemens Warnke
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Yasemin Goereci
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Thorleif Etgen
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Felix Luessi
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Paul Bronzlik
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Stefan Gingele
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Ann-Sophie Lauenstein
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Ingo Kleiter
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Paulus S. Rommer
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Friedemann Paul
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Judith Bellmann-Strobl
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Ankelien Duchow
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Florian Then Bergh
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Refik Pul
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Annette Walter
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Hannah Pellkofer
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Tania Kümpfel
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Mosche Pompsch
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Markus Kraemer
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Philipp Albrecht
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Orhan Aktas
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Marius Ringelstein
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Makbule Senel
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Katrin Giglhuber
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Achim Berthele
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Sven Jarius
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Brigitte Wildemann
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Corinna Trebst
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Full PDF
Citation
Effects of the COVID-19 Pandemic on Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Diseases
COPANMO(G)-Study
Martin W. Hümmert, Franziska Bütow, Daria Tkachenko, Ilya Ayzenberg, Thivya Pakeerathan, Kerstin Hellwig, Luisa Klotz, Vivien Häußler, Jan-Patrick Stellmann, Clemens Warnke, Yasemin Goereci, Thorleif Etgen, Felix Luessi, Paul Bronzlik, Stefan Gingele, Ann-Sophie Lauenstein, Ingo Kleiter, Paulus S. Rommer, Friedemann Paul, Judith Bellmann-Strobl, Ankelien Duchow, Florian Then Bergh, Refik Pul, Annette Walter, Hannah Pellkofer, Tania Kümpfel, Mosche Pompsch, Markus Kraemer, Philipp Albrecht, Orhan Aktas, Marius Ringelstein, Makbule Senel, Katrin Giglhuber, Achim Berthele, Sven Jarius, Brigitte Wildemann, Corinna Trebst
Neurol Neuroimmunol Neuroinflamm Mar 2023, 10 (2) e200082; DOI: 10.1212/NXI.0000000000200082

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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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