PT  - JOURNAL ARTICLE
AU  - Hümmert, Martin W.
AU  - Bütow, Franziska
AU  - Tkachenko, Daria
AU  - Ayzenberg, Ilya
AU  - Pakeerathan, Thivya
AU  - Hellwig, Kerstin
AU  - Klotz, Luisa
AU  - Häußler, Vivien
AU  - Stellmann, Jan-Patrick
AU  - Warnke, Clemens
AU  - Goereci, Yasemin
AU  - Etgen, Thorleif
AU  - Luessi, Felix
AU  - Bronzlik, Paul
AU  - Gingele, Stefan
AU  - Lauenstein, Ann-Sophie
AU  - Kleiter, Ingo
AU  - Rommer, Paulus S.
AU  - Paul, Friedemann
AU  - Bellmann-Strobl, Judith
AU  - Duchow, Ankelien
AU  - Then Bergh, Florian
AU  - Pul, Refik
AU  - Walter, Annette
AU  - Pellkofer, Hannah
AU  - Kümpfel, Tania
AU  - Pompsch, Mosche
AU  - Kraemer, Markus
AU  - Albrecht, Philipp
AU  - Aktas, Orhan
AU  - Ringelstein, Marius
AU  - Senel, Makbule
AU  - Giglhuber, Katrin
AU  - Berthele, Achim
AU  - Jarius, Sven
AU  - Wildemann, Brigitte
AU  - Trebst, Corinna
TI  - Effects of the COVID-19 Pandemic on Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Diseases
AID  - 10.1212/NXI.0000000000200082
DP  - 2023 Mar 01
TA  - Neurology - Neuroimmunology Neuroinflammation
PG  - e200082
VI  - 10
IP  - 2
4099  - http://nn.neurology.org/content/10/2/e200082.short
4100  - http://nn.neurology.org/content/10/2/e200082.full
SO  - Neurol Neuroimmunol Neuroinflamm2023 Mar 01; 10
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