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

      research-article
      , MD, , , MD, , MD, , , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD, , , MD, , MD, , MD, , MD, , MD, , MD, , MD, , MD , on behalf of Neuromyelitis Optica Study Group (NEMOS)
      Neurology® Neuroimmunology & Neuroinflammation
      Lippincott Williams & Wilkins

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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.

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          Most cited references45

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          Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)

          Purpose This article introduces the new 5-level EQ-5D (EQ-5D-5L) health status measure. Methods EQ-5D currently measures health using three levels of severity in five dimensions. A EuroQol Group task force was established to find ways of improving the instrument’s sensitivity and reducing ceiling effects by increasing the number of severity levels. The study was performed in the United Kingdom and Spain. Severity labels for 5 levels in each dimension were identified using response scaling. Focus groups were used to investigate the face and content validity of the new versions, including hypothetical health states generated from those versions. Results Selecting labels at approximately the 25th, 50th, and 75th centiles produced two alternative 5-level versions. Focus group work showed a slight preference for the wording ‘slight-moderate-severe’ problems, with anchors of ‘no problems’ and ‘unable to do’ in the EQ-5D functional dimensions. Similar wording was used in the Pain/Discomfort and Anxiety/Depression dimensions. Hypothetical health states were well understood though participants stressed the need for the internal coherence of health states. Conclusions A 5-level version of the EQ-5D has been developed by the EuroQol Group. Further testing is required to determine whether the new version improves sensitivity and reduces ceiling effects.
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            International consensus diagnostic criteria for neuromyelitis optica spectrum disorders

            Neuromyelitis optica (NMO) is an inflammatory CNS syndrome distinct from multiple sclerosis (MS) that is associated with serum aquaporin-4 immunoglobulin G antibodies (AQP4-IgG). Prior NMO diagnostic criteria required optic nerve and spinal cord involvement but more restricted or more extensive CNS involvement may occur. The International Panel for NMO Diagnosis (IPND) was convened to develop revised diagnostic criteria using systematic literature reviews and electronic surveys to facilitate consensus. The new nomenclature defines the unifying term NMO spectrum disorders (NMOSD), which is stratified further by serologic testing (NMOSD with or without AQP4-IgG). The core clinical characteristics required for patients with NMOSD with AQP4-IgG include clinical syndromes or MRI findings related to optic nerve, spinal cord, area postrema, other brainstem, diencephalic, or cerebral presentations. More stringent clinical criteria, with additional neuroimaging findings, are required for diagnosis of NMOSD without AQP4-IgG or when serologic testing is unavailable. The IPND also proposed validation strategies and achieved consensus on pediatric NMOSD diagnosis and the concepts of monophasic NMOSD and opticospinal MS.
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              A living WHO guideline on drugs for covid-19

              What is the role of drug interventions in the treatment and prevention of covid-19? The first version on this living guidance focuses on corticosteroids. It contains a strong recommendation for systemic corticosteroids in patients with severe and critical covid-19, and a weak or conditional recommendation against systemic corticosteroids in patients with non-severe covid-19. Corticosteroids are inexpensive and are on the World Health Organisation list of essential medicines. this guideline was created This guideline reflects an innovative collaboration between the WHO and the MAGIC Evidence Ecosystem Foundation, driven by an urgent need for global collaboration to provide trustworthy and living covid-19 guidance. A standing international panel of content experts, patients, clinicians, and methodologists, free from relevant conflicts of interest, produce recommendations for clinical practice. The panel follows standards, methods, processes, and platforms for trustworthy guideline development using the GRADE approach. We apply an individual patient perspective while considering contextual factors (that is, resources, feasibility, acceptability, equity) for countries and healthcare systems. A living systematic review and network meta-analysis, supported by a prospective meta-analysis, with data from eight randomised trials (7184 participants) found that systemic corticosteroids probably reduce 28 day mortality in patients with critical covid-19 (moderate certainty evidence; 87 fewer deaths per 1000 patients (95% confidence interval 124 fewer to 41 fewer)), and also in those with severe disease (moderate certainty evidence; 67 fewer deaths per 1000 patients (100 fewer to 27 fewer)). In contrast, systemic corticosteroids may increase the risk of death in patients without severe covid-19 (low certainty evidence; absolute effect estimate 39 more per 1000 patients, (12 fewer to 107 more)). Systemic corticosteroids probably reduce the need for invasive mechanical ventilation, and harms are likely to be minor (indirect evidence). The panel made a strong recommendation for use of corticosteroids in severe and critical covid-19 because there is a lower risk of death among people treated with systemic corticosteroids (moderate certainty evidence), and they believe that all or almost all fully informed patients with severe and critical covid-19 would choose this treatment. In contrast, the panel concluded that patients with non-severe covid-19 would decline this treatment because they would be unlikely to benefit and may be harmed. Moreover, taking both a public health and a patient perspective, the panel warned that indiscriminate use of any therapy for covid-19 would potentially rapidly deplete global resources and deprive patients who may benefit from it most as potentially lifesaving therapy. This is a living guideline. Work is under way to evaluate other interventions. New recommendations will be published as updates to this guideline. This is version 1 of the living guideline, published on 4 September ( BMJ 2020;370:m3379) version 1. Updates will be labelled as version 2, 3 etc. When citing this article, please cite the version number. August 28 August 31
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                Author and article information

                Journal
                Neurol Neuroimmunol Neuroinflamm
                Neurol Neuroimmunol Neuroinflamm
                nnn
                NEURIMMINFL
                Neurology® Neuroimmunology & Neuroinflammation
                Lippincott Williams & Wilkins (Hagerstown, MD )
                2332-7812
                March 2023
                24 January 2023
                24 January 2023
                : 10
                : 2
                : e200082
                Affiliations
                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.
                Author notes
                Correspondence Dr. Trebst trebst.corinna@ 123456mh-hannover.de

                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.

                Article
                NXI-2022-200089
                10.1212/NXI.0000000000200082
                10108387
                36693760
                04fdfdc4-9297-4f9e-ab8b-60dcd2ec2290
                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.

                History
                : 16 September 2022
                : 16 November 2022
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