Health-related quality of life of multiple sclerosis patients: a European multi-country study

Laurenske A. Visser*, Celine Louapre, Carin A. Uyl-de Groot, WK (Ken) Redekop

*Corresponding author for this work

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Abstract

Background: Inconsistent use of generic and disease-specific health-related quality of life (HRQOL) instruments in multiple sclerosis (MS) studies limits cross-country comparability. The objectives: 1) investigate real-world HRQOL of MS patients using both generic and disease-specific HRQOL instruments in the Netherlands, France, the United Kingdom, Spain, Germany and Italy; 2) compare HRQOL among these countries; 3) determine factors associated with HRQOL. Methods: A cross-sectional, observational online web-based survey amongst MS patients was conducted in June–October 2019. Patient demographics, clinical characteristics, and two HRQOL instruments: the generic EuroQOL (EQ-5D-5L) and disease-related Multiple Sclerosis Quality of Life (MSQOL)-54, an extension of the generic Short Form-36 (SF-36) was collected. Health utility scores were calculated using country-specific value sets. Mean differences in HRQOL were analysed and predictors of HRQOL were explored in regression analyses. Results: In total 182 patients were included (the Netherlands: n = 88; France: n = 58; the United Kingdom: n = 15; Spain: n = 10; living elsewhere: n = 11). Mean MSQOL-54 physical and mental composite scores (42.5, SD:17.2; 58.3, SD:21.5) were lower, whereas the SF-36 physical and mental composite scores (46.8, SD:22.6; 53.1, SD:22.5) were higher than reported in previous clinical trials. The mean EQ-5D utility was 0.65 (SD:0.26). Cross-country differences in HRQOL were found. A common predictor of HRQOL was disability status and primary progressive MS. Conclusions: The effects of MS on HRQOL in real-world patients may be underestimated. Combined use of generic and disease-specific HRQOL instruments enhance the understanding of the health needs of MS patients. Consequent use of the same instruments in clinical trials and observational studies improves cross-country comparability of HRQOL.

Original languageEnglish
Article number39
JournalArchives of Public Health
Volume79
Issue number1
DOIs
Publication statusPublished - 20 Mar 2021

Bibliographical note

Funding Information:
European Union’s Horizon 2020 research and innovation program under grant agreement no. 720694. The funding sources had no involvement in the study design, the collection, analysis and interpretation of data, writing the report, or in the decision to submit the article for publication.

Funding Information:
We acknowledge the funding this study has received from the European Union’s Horizon 2020 research and innovation program under grant agreement no. 720694.

Funding Information:
Disclosure of conflict of interest: Dr. Visser reports grants from European Union’s Horizon 2020 research and innovation program, during the conduct of the study; Dr. Louapre reports grants and personal fees from Biogen, personal fees from Novartis, personal fees from Merck, personal fees from Roche, personal fees from Teva, personal fees from Sanofi, outside the submitted work; Dr. Uyl-de Groot has nothing to disclose.; Dr. Redekop reports grants from European Union’s Horizon 2020 research and innovation program, during the conduct of the study

Publisher Copyright:
© 2021, The Author(s).

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