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

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 a...

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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Lippincott Williams & Wilkins 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8935443/
https://www.ncbi.nlm.nih.gov/pubmed/35082170
http://dx.doi.org/10.1212/WNL.0000000000200052
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author 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
author_facet 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
author_sort Hümmert, Martin W.
collection PubMed
description 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.
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spelling pubmed-89354432022-03-21 Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Disease: CHANCE(NMO) 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 Neurology Research Article 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. Lippincott Williams & Wilkins 2022-03-15 /pmc/articles/PMC8935443/ /pubmed/35082170 http://dx.doi.org/10.1212/WNL.0000000000200052 Text en Copyright © 2022 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND) (https://creativecommons.org/licenses/by-nc-nd/4.0/) , 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.
spellingShingle Research Article
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
Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Disease: CHANCE(NMO) Study
title Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Disease: CHANCE(NMO) Study
title_full Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Disease: CHANCE(NMO) Study
title_fullStr Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Disease: CHANCE(NMO) Study
title_full_unstemmed Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Disease: CHANCE(NMO) Study
title_short Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody–Associated Disease: CHANCE(NMO) Study
title_sort costs and health-related quality of life in patients with nmo spectrum disorders and mog-antibody–associated disease: chance(nmo) study
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8935443/
https://www.ncbi.nlm.nih.gov/pubmed/35082170
http://dx.doi.org/10.1212/WNL.0000000000200052
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