Cargando…
People Diagnosed with Myasthenia Gravis have Lower health-related quality of life and Need More Medical and Caregiver Help in Comparison to the General Population: Analysis of Two Observational Studies
INTRODUCTION: Myasthenia gravis (MG) is a neuromuscular disease causing extreme muscular fatigue, triggering problems with vision, swallowing, speech, mobility, dexterity, and breathing. This analysis intended to estimate the health-related quality-of-life impact, the medical burden, and the need fo...
Autores principales: | , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer Healthcare
2023
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10499690/ https://www.ncbi.nlm.nih.gov/pubmed/37490259 http://dx.doi.org/10.1007/s12325-023-02604-z |
_version_ | 1785105760395460608 |
---|---|
author | Dewilde, S. Phillips, G. Paci, S. De Ruyck, F. Tollenaar, N. H. Janssen, M. F. |
author_facet | Dewilde, S. Phillips, G. Paci, S. De Ruyck, F. Tollenaar, N. H. Janssen, M. F. |
author_sort | Dewilde, S. |
collection | PubMed |
description | INTRODUCTION: Myasthenia gravis (MG) is a neuromuscular disease causing extreme muscular fatigue, triggering problems with vision, swallowing, speech, mobility, dexterity, and breathing. This analysis intended to estimate the health-related quality-of-life impact, the medical burden, and the need for caregiver help of people diagnosed with MG. METHODS: MyRealWorld-MG (MRW) is an observational study among adults diagnosed with MG in 9 countries. The General Population Norms (POPUP) observational study enrolled representative members of the general population in 8 countries. In both digital studies, respondents entered personal characteristics and provided data on medical conditions, EQ-5D-5L, HUI3, MG-Activities of Daily Living (MG-ADL), sick leave, caregiver help, and medical care utilization. RESULTS: In MRW (n = 1859), 58.4% of respondents had moderate-to-severe MG. Average utility values were lower in MRW versus POPUP (0.739 vs. 0.843 for EQ-5D-5L; 0.493 vs. 0.746 for HUI3), and declined with more severe disease (0.872, 0.707, 0.511 EQ-5D-5L utilities and 0.695, 0.443, 0.168 HUI3 utilities for mild, moderate, and severe MG, respectively). Taking sick leave in the past month was 2.6 times more frequent among people diagnosed with MG compared to the general population (34.4% vs. 13.2%) and four times more people diagnosed with MG reported needing help from a caregiver (34.8% vs. 8.3%). Use of medical care was twice as likely in MRW in comparison with POPUP (51.9% vs. 24.6%). CONCLUSION: This direct comparison of people diagnosed with MG and the general population using two large international studies revealed significant negative impact of MG. Results were consistent across all outcomes, in all countries. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12325-023-02604-z. |
format | Online Article Text |
id | pubmed-10499690 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Springer Healthcare |
record_format | MEDLINE/PubMed |
spelling | pubmed-104996902023-09-15 People Diagnosed with Myasthenia Gravis have Lower health-related quality of life and Need More Medical and Caregiver Help in Comparison to the General Population: Analysis of Two Observational Studies Dewilde, S. Phillips, G. Paci, S. De Ruyck, F. Tollenaar, N. H. Janssen, M. F. Adv Ther Original Research INTRODUCTION: Myasthenia gravis (MG) is a neuromuscular disease causing extreme muscular fatigue, triggering problems with vision, swallowing, speech, mobility, dexterity, and breathing. This analysis intended to estimate the health-related quality-of-life impact, the medical burden, and the need for caregiver help of people diagnosed with MG. METHODS: MyRealWorld-MG (MRW) is an observational study among adults diagnosed with MG in 9 countries. The General Population Norms (POPUP) observational study enrolled representative members of the general population in 8 countries. In both digital studies, respondents entered personal characteristics and provided data on medical conditions, EQ-5D-5L, HUI3, MG-Activities of Daily Living (MG-ADL), sick leave, caregiver help, and medical care utilization. RESULTS: In MRW (n = 1859), 58.4% of respondents had moderate-to-severe MG. Average utility values were lower in MRW versus POPUP (0.739 vs. 0.843 for EQ-5D-5L; 0.493 vs. 0.746 for HUI3), and declined with more severe disease (0.872, 0.707, 0.511 EQ-5D-5L utilities and 0.695, 0.443, 0.168 HUI3 utilities for mild, moderate, and severe MG, respectively). Taking sick leave in the past month was 2.6 times more frequent among people diagnosed with MG compared to the general population (34.4% vs. 13.2%) and four times more people diagnosed with MG reported needing help from a caregiver (34.8% vs. 8.3%). Use of medical care was twice as likely in MRW in comparison with POPUP (51.9% vs. 24.6%). CONCLUSION: This direct comparison of people diagnosed with MG and the general population using two large international studies revealed significant negative impact of MG. Results were consistent across all outcomes, in all countries. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12325-023-02604-z. Springer Healthcare 2023-07-25 2023 /pmc/articles/PMC10499690/ /pubmed/37490259 http://dx.doi.org/10.1007/s12325-023-02604-z Text en © The Author(s) 2023 https://creativecommons.org/licenses/by-nc/4.0/Open Access This article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) . |
spellingShingle | Original Research Dewilde, S. Phillips, G. Paci, S. De Ruyck, F. Tollenaar, N. H. Janssen, M. F. People Diagnosed with Myasthenia Gravis have Lower health-related quality of life and Need More Medical and Caregiver Help in Comparison to the General Population: Analysis of Two Observational Studies |
title | People Diagnosed with Myasthenia Gravis have Lower health-related quality of life and Need More Medical and Caregiver Help in Comparison to the General Population: Analysis of Two Observational Studies |
title_full | People Diagnosed with Myasthenia Gravis have Lower health-related quality of life and Need More Medical and Caregiver Help in Comparison to the General Population: Analysis of Two Observational Studies |
title_fullStr | People Diagnosed with Myasthenia Gravis have Lower health-related quality of life and Need More Medical and Caregiver Help in Comparison to the General Population: Analysis of Two Observational Studies |
title_full_unstemmed | People Diagnosed with Myasthenia Gravis have Lower health-related quality of life and Need More Medical and Caregiver Help in Comparison to the General Population: Analysis of Two Observational Studies |
title_short | People Diagnosed with Myasthenia Gravis have Lower health-related quality of life and Need More Medical and Caregiver Help in Comparison to the General Population: Analysis of Two Observational Studies |
title_sort | people diagnosed with myasthenia gravis have lower health-related quality of life and need more medical and caregiver help in comparison to the general population: analysis of two observational studies |
topic | Original Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10499690/ https://www.ncbi.nlm.nih.gov/pubmed/37490259 http://dx.doi.org/10.1007/s12325-023-02604-z |
work_keys_str_mv | AT dewildes peoplediagnosedwithmyastheniagravishavelowerhealthrelatedqualityoflifeandneedmoremedicalandcaregiverhelpincomparisontothegeneralpopulationanalysisoftwoobservationalstudies AT phillipsg peoplediagnosedwithmyastheniagravishavelowerhealthrelatedqualityoflifeandneedmoremedicalandcaregiverhelpincomparisontothegeneralpopulationanalysisoftwoobservationalstudies AT pacis peoplediagnosedwithmyastheniagravishavelowerhealthrelatedqualityoflifeandneedmoremedicalandcaregiverhelpincomparisontothegeneralpopulationanalysisoftwoobservationalstudies AT deruyckf peoplediagnosedwithmyastheniagravishavelowerhealthrelatedqualityoflifeandneedmoremedicalandcaregiverhelpincomparisontothegeneralpopulationanalysisoftwoobservationalstudies AT tollenaarnh peoplediagnosedwithmyastheniagravishavelowerhealthrelatedqualityoflifeandneedmoremedicalandcaregiverhelpincomparisontothegeneralpopulationanalysisoftwoobservationalstudies AT janssenmf peoplediagnosedwithmyastheniagravishavelowerhealthrelatedqualityoflifeandneedmoremedicalandcaregiverhelpincomparisontothegeneralpopulationanalysisoftwoobservationalstudies |