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Multicenter Study
. 2023 Jan 24;10(2):e200082.
doi: 10.1212/NXI.0000000000200082. Print 2023 Mar.

Effects of the COVID-19 Pandemic on Patients With NMO Spectrum Disorders and MOG-Antibody-Associated Diseases: COPANMO(G)-Study

Martin W Hümmert  1 , Franziska Bütow  1 , Daria Tkachenko  1 , Ilya Ayzenberg  1 , Thivya Pakeerathan  1 , Kerstin Hellwig  1 , Luisa Klotz  1 , Vivien Häußler  1 , Jan-Patrick Stellmann  1 , Clemens Warnke  1 , Yasemin Goereci  1 , Thorleif Etgen  1 , Felix Luessi  1 , Paul Bronzlik  1 , Stefan Gingele  1 , Ann-Sophie Lauenstein  1 , Ingo Kleiter  1 , Paulus S Rommer  1 , Friedemann Paul  1 , Judith Bellmann-Strobl  1 , Ankelien Duchow  1 , Florian Then Bergh  1 , Refik Pul  1 , Annette Walter  1 , Hannah Pellkofer  1 , Tania Kümpfel  1 , Mosche Pompsch  1 , Markus Kraemer  1 , Philipp Albrecht  1 , Orhan Aktas  1 , Marius Ringelstein  1 , Makbule Senel  1 , Katrin Giglhuber  1 , Achim Berthele  1 , Sven Jarius  1 , Brigitte Wildemann  1 , Corinna Trebst; Neuromyelitis Optica Study Group (NEMOS)
Collaborators, Affiliations
Multicenter Study

Effects of the COVID-19 Pandemic on Patients With NMO Spectrum Disorders and MOG-Antibody-Associated Diseases: COPANMO(G)-Study

Martin W Hümmert et al. Neurol Neuroimmunol Neuroinflamm. .

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.

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Conflict of interest statement

M.W. Hümmert declares that he has no conflict of interest. F. Bütow declares that she has no conflict of interest. D. Tkachenko declares that she has no conflict of interest. I. Ayzenberg has received travel grants from Biogen Idec and Guthy-Jackson Charitable Foundation, served on scientific advisory boards for Roche and Alexion, and received research support from Diamed, none related to this manuscript. T. Pakeerathan declares that she has no conflict of interest. K. Hellwig received consultant and speaker honoraria from Bayer, Biogen, Merck, Novartis, Sanofi Genzyme, Roche, and Teva. L. Klotz received compensation for serving on Scientific Advisory Boards for Alexion, Genzyme, Janssen, Merck Serono, Novartis, and Roche. She received speaker honoraria and travel support from Bayer, Biogen, Genzyme, Grifols, Merck Serono, Novartis, Roche, Santhera, and Teva. She receives research support from the German Research Foundation, the IZKF Münster, IMF Münster, Biogen, Novartis, and Merck Serono. V. Häußler declares that she has no conflict of interest. J.-P. Stellmann received research grants and speaker honoraria from Biogen, Genzyme, and Alexion outside the submitted work. C. Warnke has received institutional honoraria and/or grant support from Novartis, Sanofi-Genzyme, Alexion, Janssen, Merck, Biogen, and Roche. Y. Goereci declares that she has no conflict of interest. T. Etgen declares that he has no conflict of interest. F. Luessi received consultancy fees from Roche and support with travel cost from Teva Pharma. P. Bronzlik declares that he has no conflict of interest. S. Gingele reports research support from Alnylam Pharmaceuticals, CSL Behring, Else Kröner Fresenius Foundation, Deutsche Forschungsgemeinschaft, and Hannover Biomedical Research School (HBRS) and honoraria for lectures from Alnylam and Merck all outside the submitted work. A.S. Lauenstein has received speaker honoraria from Novartis and Roche, as well as compensation for serving on an advisory board of Teva. I. Kleiter has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Alexion, Almirall, Biogen, Celgene, Hexal, Horizon, Merck, and Roche/Chugai. P.S. Rommer has received speaker honoraria including advisory boards speaker honoraria from Alexion, Allmiral, Amicus, Biogen, Merck, Novartis, Sandoz, Sanofi Genzyme, Roche, and Teva. F. Paul declares that he has no conflict of interest. J. Bellmann-Strobl has received travel grants and speaking honoraria from Bayer Healthcare, Sanofi Genzyme, in addition to received compensation for serving on a scientific advisory board of Roche, all unrelated to this work. A. Duchow declares that she has no conflict of interest. F. Then Bergh has received honoraria for speaking and advisory board consultation from Alexion, Roche, and Horizon Therapeutics, all unrelated to this work. R. Pul received honoraria for lectures from Alexion, Bayer Healthcare, Biogen, BMS/Celgene, Horizon, Novartis, Merck, Roche, Sanofi-Aventis, and Teva. He received research grants from HERZ Burgdorf, Novartis, and Merck. A. Walter received speaker honoraria and meeting expenses from Novartis, Bayer, Biogen, Sanofi Genzyme, Teva, Roche, and Merck. H. Pellkofer received honoraria for lectures from Bayer Health Care, Biogen Idec, and Teva Pharma and travel reimbursement from Novartis. T. Kümpfel has received speaker honoraria including advisory boards from Bayer Healthcare, Teva Pharma, Merck, Novartis Pharma, Sanofi-Aventis/Genzyme, Roche Pharma, and Biogen as well as grant support from Novartis and Chugai Pharma in the past. M. Pompsch Declares that he has no conflict of interest. M. Kraemer Received consulting and/or speaker honoraria from Chugai Pharma and Roche Pharma. P. Albrecht Has received personal fees, travel support, and research grants from Abbvie, Allergan, Bristol Myers Squibb, Celgene, Ipsen, Janssen Cilag, Lilly, Merck, Merz, Novartis, Roche, and Teva outside the submitted work. O. Aktas has received personal fees from Alexion, Bayer Healthcare, Biogen, Celgene, Merck Serono, MedImmune, Novartis, Roche, Teva, and Zambon, outside of the submitted work. M. Ringelstein received speaker honoraria from Novartis, Bayer Vital GmbH, Roche, Alexion, and Ipsen and travel reimbursement from Bayer Schering, Biogen Idec, Merz, Genzyme, Teva, and Merck, none related to this study. M. Senel has received consulting and/or speaker honoraria from Alexion, Bayer, Biogen, Bristol-Myers-Squibb, Merck, Roche, and Sanofi Genzyme. She has received travel support from Celgene and TEVA. She has received research funding from the Hertha-Nathorff-Program. None of this related to the current study. K. Giglhuber declares that she has no conflict of interest. A. Berthele received speaker and consulting honoraria from Alexion, Biogen, Bayer Healthcare, Celgene, Merck, Novartis Pharma, and Roche, all outside the submitted work. S. Jarius declares that he has no conflict of interest. B. Wildemann received grants from the German Ministry of Education and Research, German Research Foundation, Dietmar Hopp Foundation, Klaus Tschira Foundation, and Merck Serono; grants and personal fees from Merck, Novartis, and Sanofi Genzyme; and personal fees from Bayer, Biogen, Roche, and TEVA, none related to this work. C. Trebst has received honoraria for consultation and expert testimony from Alexion Pharma Germany GmbH, Chugai Pharma Germany GmbH, and Roche Pharma GmbH. None of this interfered with the current report. Go to Neurology.org/NN for full disclosure.

Figures

Figure 1
Figure 1. Pathologic MRI Findings in Temporal Association With Vaccination Against SARS-CoV-2 in 4 Different Patients (A–D)
Further details in Table 3. (A) Sagittal T2-weighted spinal MRI disclosed a longitudinally extensive spinal cord lesion extending from T2-T8 (arrowheads indicate the start and end of the lesion) in a patient with new-onset MOG-IgG–positive myelitis. (B) Axial FLAIR imaging reveals a lesion in the right thalamus (arrow, B.a) and coronal T2-weighted imaging bilateral hyperintense lesions in the hippocampus (arrowheads, B.b) in another patient with new-onset MOGAD. (C) Longitudinal hyperintense signal of the optic nerve (axial FLAIR imaging, C.a) with gadolinium enhancement (coronal postgadolinium T1-weighted image, C.b) in a third patient with new-onset MOGAD. (D) Three different axial FLAIR layers show several new large lesions after vaccination (post) vs before vaccination (pre). The lines in the axial images indicate the localization of the respective coronal layer. FLAIR = fluid-attenuated inversion recovery; MOG-IgG = myelin oligodendrocyte glycoprotein immunoglobulin G; MOGAD = myelin oligodendrocyte glycoprotein antibody–associated diseases.
Figure 2
Figure 2. Level of Problems Experienced by Patients
Patients were able to provide levels on a scale from 0 to 5 (0 = no problems, 5 = unable/extreme problems) for each of the 5 dimensions of the EuroQoL Group 5-Dimension 5-Level questionnaire.
See this image and copyright information in PMC

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