Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody-Associated Disease: CHANCENMO Study

Martin W Hümmert; Louisa M Schöppe; Judith Bellmann-Strobl; Nadja Siebert; Friedemann Paul; Ankelien Duchow; Hannah Pellkofer; Tania Kümpfel; Joachim Havla; Sven Jarius; Brigitte Wildemann; Achim Berthele; Florian Then Bergh; Marc Pawlitzki; Luisa Klotz; Ingo Kleiter; Martin Stangel; Stefan Gingele; Martin S Weber; Juergen H Faiss; Refik Pul; Annette Walter; Uwe K Zettl; Makbule Senel; Jan-Patrick Stellmann; Vivien Häußler; Kerstin Hellwig; Ilya Ayzenberg; Orhan Aktas; Marius Ringelstein; Olivia Schreiber-Katz; Corinna Trebst; Neuromyelitis Optica Study Group (NEMOS)

doi:10.1212/WNL.0000000000200052

Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody-Associated Disease: CHANCE^NMO Study

Neurology. 2022 Mar 15;98(11):e1184-e1196. doi: 10.1212/WNL.0000000000200052. Epub 2022 Jan 26.

Authors

Martin W Hümmert¹, Louisa M Schöppe¹, Judith Bellmann-Strobl¹, Nadja Siebert¹, Friedemann Paul¹, Ankelien Duchow¹, Hannah Pellkofer¹, Tania Kümpfel¹, Joachim Havla¹, Sven Jarius¹, Brigitte Wildemann¹, Achim Berthele¹, Florian Then Bergh¹, Marc Pawlitzki¹, Luisa Klotz¹, Ingo Kleiter¹, Martin Stangel¹, Stefan Gingele¹, Martin S Weber¹, Juergen H Faiss¹, Refik Pul¹, Annette Walter¹, Uwe K Zettl¹, Makbule Senel¹, Jan-Patrick Stellmann¹, Vivien Häußler¹, Kerstin Hellwig¹, Ilya Ayzenberg¹, Orhan Aktas¹, Marius Ringelstein¹, Olivia Schreiber-Katz¹, Corinna Trebst²; Neuromyelitis Optica Study Group (NEMOS)

Affiliations

¹ From the Department of Neurology (M.W.H., L.M.S., M. Stangle, S.G., O.S.-K., C.T.), Hannover Medical School; NeuroCure Clinical Research Center (J.B.-S, N.S., F.P., A.D.), Charité Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, and Max Delbrück Center for Molecular Medicine; Experimental and Clinical Research Center (J.B.-S., N.S., F.P., A.D.), Charité Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin; Department of Neurology (F.P.), Charité Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health; Institute of Clinical Neuroimmunology (H.P., T.K., J.H.), LMU Hospital, Ludwig-Maximilians Universität München, Munich; Institute of Neuropathology (H.P., M.S.W.), Department of Neurology, University Medical Center Göttingen; Molecular Neuroimmunology Group (S.J., B.W.), Department of Neurology, University of Heidelberg; Department of Neurology (A.B.), School of Medicine, Technical University Munich, Klinikum rechts der Isar; Department of Neurology (F.T.B.), University of Leipzig; Department of Neurology (M.P., L.K.), University of Münster; Department of Neurology (M.P.), Otto-von-Guericke University of Magdeburg; Marianne-Strauß-Klinik (I.K.), Behandlungszentrum Kempfenhausen für Multiple Sklerose Kranke, Berg; Department of Neurology (I.K., K.H., I.A.), St. Josef Hospital, Ruhr University Bochum; Department of Neurology (J.H.F.), Asklepios Expert Clinic Teupitz; Department of Neurology (R.P.), University of Essen; Department of Neurology (A.W.), Herford Hospital; Neuroimmunological Section (U.K.Z.), Department of Neurology, University of Rostock; Department of Neurology (M. Senel), University of Ulm; Department of Neurology and Institute of Neuroimmunology and MS (INIMS) (J.-P.S., V.H.), University Medical Center Hamburg-Eppendorf, Germany; 20. Aix-Marseille Univ (J.-P.S.), CNRS, CRMBM, UMR 7339; APHM (J.-P.S.), Hopital de la Timone, CEMEREM, Marseille, France; I.M. Sechenov First Moscow State Medical University (I.A.), Moscow, Russia; and Department of Neurology (O.A., M.R.), Medical Faculty, and Department of Neurology (M.R.), Center for Neurology and Neuropsychiatry, LVR-Klinikum, Heinrich Heine University Düsseldorf, Germany.
² From the Department of Neurology (M.W.H., L.M.S., M. Stangle, S.G., O.S.-K., C.T.), Hannover Medical School; NeuroCure Clinical Research Center (J.B.-S, N.S., F.P., A.D.), Charité Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, and Max Delbrück Center for Molecular Medicine; Experimental and Clinical Research Center (J.B.-S., N.S., F.P., A.D.), Charité Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin; Department of Neurology (F.P.), Charité Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health; Institute of Clinical Neuroimmunology (H.P., T.K., J.H.), LMU Hospital, Ludwig-Maximilians Universität München, Munich; Institute of Neuropathology (H.P., M.S.W.), Department of Neurology, University Medical Center Göttingen; Molecular Neuroimmunology Group (S.J., B.W.), Department of Neurology, University of Heidelberg; Department of Neurology (A.B.), School of Medicine, Technical University Munich, Klinikum rechts der Isar; Department of Neurology (F.T.B.), University of Leipzig; Department of Neurology (M.P., L.K.), University of Münster; Department of Neurology (M.P.), Otto-von-Guericke University of Magdeburg; Marianne-Strauß-Klinik (I.K.), Behandlungszentrum Kempfenhausen für Multiple Sklerose Kranke, Berg; Department of Neurology (I.K., K.H., I.A.), St. Josef Hospital, Ruhr University Bochum; Department of Neurology (J.H.F.), Asklepios Expert Clinic Teupitz; Department of Neurology (R.P.), University of Essen; Department of Neurology (A.W.), Herford Hospital; Neuroimmunological Section (U.K.Z.), Department of Neurology, University of Rostock; Department of Neurology (M. Senel), University of Ulm; Department of Neurology and Institute of Neuroimmunology and MS (INIMS) (J.-P.S., V.H.), University Medical Center Hamburg-Eppendorf, Germany; 20. Aix-Marseille Univ (J.-P.S.), CNRS, CRMBM, UMR 7339; APHM (J.-P.S.), Hopital de la Timone, CEMEREM, Marseille, France; I.M. Sechenov First Moscow State Medical University (I.A.), Moscow, Russia; and Department of Neurology (O.A., M.R.), Medical Faculty, and Department of Neurology (M.R.), Center for Neurology and Neuropsychiatry, LVR-Klinikum, Heinrich Heine University Düsseldorf, Germany. trebst.corinna@mh-hannover.de.

Abstract

Background and objectives: To evaluate costs and health-related quality of life (HRQoL) of neuromyelitis optica spectrum disorders (NMOSD) and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD).

Methods: In this multicenter cross-sectional study, data on consumption of medical and nonmedical resources and work ability were assessed via patient questionnaires. Costs were analyzed in Euros for 2018 from the societal perspective. HRQoL was captured by the EuroQoL Group 5 Dimension 5 Level Scale (EQ-5D-5L) questionnaire. Clinical data were retrieved from the Neuromyelitis Optica Study Group (NEMOS) database.

Results: Two hundred twelve patients (80% women, median age 50 [19-83] years, median disease duration 7 [0-43] years, median Expanded Disability Status Scale [EDSS] score 3.5 [0-8.5], 66% aquaporin-4 immunoglobulin G [IgG] positive, 22% MOG IgG positive, 12% double seronegative) were analyzed. The mean total annual per capita cost of illness accounted for €59,574 (95% CI 51,225-68,293 or US dollars [USD] 70,297, 95% CI 60,445-80,586), and the mean index value of the EQ-5D-5L was 0.693 (95% CI 0.65-0.73). The most important cost drivers were informal care costs (28% of total costs), indirect costs (23%), and drugs (16%), especially immunotherapeutics. Costs showed a positive correlation with disease severity (ρ = 0.56, 95% CI 0.45-0.65); in the EDSS score 6.5 to 8.5 subgroup, the mean annual costs were €129,687 (95% CI 101,946-160,336 or USD 153,031, 95% CI 120,296-189,196). The HRQoL revealed a negative correlation to disease severity (ρ = -0.69, 95% CI -0.76 to -0.61); in the EDSS score 6.5 to 8.5 subgroup, the EQ-5D-5L mean index value was 0.195 (95% CI 0.13-0.28). Neither antibody status nor disease duration influenced the total annual costs or HRQoL.

Discussion: These German data from the era without approved preventive immunotherapies show enormous effects of the diseases on costs and quality of life. An early and cost-effective therapy should be provided to prevent long-term disability and to preserve quality of life.

Publication types

Multicenter Study
Research Support, Non-U.S. Gov't

MeSH terms

Adult
Aged
Aged, 80 and over
Aquaporin 4
Autoantibodies
Cross-Sectional Studies
Female
Humans
Male
Middle Aged
Myelin-Oligodendrocyte Glycoprotein
Neuromyelitis Optica*
Quality of Life
Young Adult

Substances

Aquaporin 4
Autoantibodies
Myelin-Oligodendrocyte Glycoprotein