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Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody-Associated Disease: CHANCENMO Study.
Hümmert, Martin W; Schöppe, Louisa M; Bellmann-Strobl, Judith; Siebert, Nadja; Paul, Friedemann; Duchow, Ankelien; Pellkofer, Hannah; Kümpfel, Tania; Havla, Joachim; Jarius, Sven; Wildemann, Brigitte; Berthele, Achim; Bergh, Florian Then; Pawlitzki, Marc; Klotz, Luisa; Kleiter, Ingo; Stangel, Martin; Gingele, Stefan; Weber, Martin S; Faiss, Juergen H; Pul, Refik; Walter, Annette; Zettl, Uwe K; Senel, Makbule; Stellmann, Jan-Patrick; Häußler, Vivien; Hellwig, Kerstin; Ayzenberg, Ilya; Aktas, Orhan; Ringelstein, Marius; Schreiber-Katz, Olivia; Trebst, Corinna.
Afiliación
  • Hümmert MW; 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 Ins
  • Schöppe LM; 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 Ins
  • Bellmann-Strobl J; 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 Ins
  • Siebert N; 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 Ins
  • Paul F; 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 Ins
  • Duchow A; 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 Ins
  • Pellkofer H; 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 Ins
  • Kümpfel T; 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 Ins
  • Havla J; 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 Ins
  • Jarius S; 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 Ins
  • Wildemann B; 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 Ins
  • Berthele A; 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 Ins
  • Bergh FT; 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 Ins
  • Pawlitzki M; 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 Ins
  • Klotz L; 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 Ins
  • Kleiter I; 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 Ins
  • Stangel M; 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 Ins
  • Gingele S; 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 Ins
  • Weber MS; 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 Ins
  • Faiss JH; 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 Ins
  • Pul R; 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 Ins
  • Walter A; 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 Ins
  • Zettl UK; 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 Ins
  • Senel M; 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 Ins
  • Stellmann JP; 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 Ins
  • Häußler V; 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 Ins
  • Hellwig K; 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 Ins
  • Ayzenberg I; 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 Ins
  • Aktas O; 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 Ins
  • Ringelstein M; 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 Ins
  • Schreiber-Katz O; 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 Ins
  • Trebst C; 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 Ins
Neurology ; 98(11): e1184-e1196, 2022 03 15.
Article en En | MEDLINE | ID: mdl-35082170
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.
Asunto(s)

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Neuromielitis Óptica Tipo de estudio: Clinical_trials / Health_economic_evaluation / Observational_studies / Prevalence_studies / Qualitative_research / Risk_factors_studies Aspecto: Patient_preference Límite: Adult / Aged / Aged80 / Female / Humans / Male / Middle aged Idioma: En Revista: Neurology Año: 2022 Tipo del documento: Article Pais de publicación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Neuromielitis Óptica Tipo de estudio: Clinical_trials / Health_economic_evaluation / Observational_studies / Prevalence_studies / Qualitative_research / Risk_factors_studies Aspecto: Patient_preference Límite: Adult / Aged / Aged80 / Female / Humans / Male / Middle aged Idioma: En Revista: Neurology Año: 2022 Tipo del documento: Article Pais de publicación: Estados Unidos