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 Hümmert, Martin W.
A1 Bütow, Franziska
A1 Tkachenko, Daria
A1 Ayzenberg, Ilya
A1 Pakeerathan, Thivya
A1 Hellwig, Kerstin
A1 Klotz, Luisa
A1 Häußler, Vivien
A1 Stellmann, Jan-Patrick
A1 Warnke, Clemens
A1 Goereci, Yasemin
A1 Etgen, Thorleif
A1 Luessi, Felix
A1 Bronzlik, Paul
A1 Gingele, Stefan
A1 Lauenstein, Ann-Sophie
A1 Kleiter, Ingo
A1 Rommer, Paulus S.
A1 Paul, Friedemann
A1 Bellmann-Strobl, Judith
A1 Duchow, Ankelien
A1 Then Bergh, Florian
A1 Pul, Refik
A1 Walter, Annette
A1 Pellkofer, Hannah
A1 Kümpfel, Tania
A1 Pompsch, Mosche
A1 Kraemer, Markus
A1 Albrecht, Philipp
A1 Aktas, Orhan
A1 Ringelstein, Marius
A1 Senel, Makbule
A1 Giglhuber, Katrin
A1 Berthele, Achim
A1 Jarius, Sven
A1 Wildemann, Brigitte
A1 Trebst, Corinna
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