RT Journal Article
SR Electronic
T1 Effects of the COVID-19 Pandemic on Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Diseases
JF Neurology - Neuroimmunology Neuroinflammation
JO Neurol Neuroimmunol Neuroinflamm
FD Lippincott Williams & Wilkins
SP e200082
DO 10.1212/NXI.0000000000200082
VO 10
IS 2
A1 Martin W. Hümmert
A1 Franziska Bütow
A1 Daria Tkachenko
A1 Ilya Ayzenberg
A1 Thivya Pakeerathan
A1 Kerstin Hellwig
A1 Luisa Klotz
A1 Vivien Häußler
A1 Jan-Patrick Stellmann
A1 Clemens Warnke
A1 Yasemin Goereci
A1 Thorleif Etgen
A1 Felix Luessi
A1 Paul Bronzlik
A1 Stefan Gingele
A1 Ann-Sophie Lauenstein
A1 Ingo Kleiter
A1 Paulus S. Rommer
A1 Friedemann Paul
A1 Judith Bellmann-Strobl
A1 Ankelien Duchow
A1 Florian Then Bergh
A1 Refik Pul
A1 Annette Walter
A1 Hannah Pellkofer
A1 Tania Kümpfel
A1 Mosche Pompsch
A1 Markus Kraemer
A1 Philipp Albrecht
A1 Orhan Aktas
A1 Marius Ringelstein
A1 Makbule Senel
A1 Katrin Giglhuber
A1 Achim Berthele
A1 Sven Jarius
A1 Brigitte Wildemann
A1 Corinna Trebst
YR 2023
UL http://nn.neurology.org/content/10/2/e200082.abstract
AB 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.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