How to measure fluctuating impairments in people with MS: development of an ambulatory assessment version of the EQ-5D-5L in an exploratory study

Christine Blome*, Jill Carlton, Christoph Heesen, Mathieu F. Janssen, Andrew Lloyd, Marina Otten, John Brazier

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

1 Citation (Scopus)

Abstract

Background: Health fluctuations even within a single day are typical in multiple sclerosis (MS), but are not captured by widely used questionnaires like the EQ-5D-5L. This exploratory study aimed to develop an ambulatory assessment (AA) version of the EQ-5D-5L (EQ-5D-AA) where patients rate their health on mobile phones multiple times per day over several days, and to assess its feasibility and face validity. Methods: An initial EQ-5D-AA version was based on two patient focus groups. It was then tested and continuously developed in an iterative process: patients completed it over several days, followed by debriefing interviews. Findings were used to refine the EQ-5D-AA, with the resulting version being tested by the subsequent wave of patients until participants declared no need for changes anymore. Before and after the AA period, participants completed the standard paper-based EQ-5D-5L asking about ‘today’. Results: Focus group participants reported that their impairments often fluctuated between and within days. They regarded an AA with three assessments per day over seven days most appropriate; assessment should be retrospective to the previous assessment, but not all items should be assessed at each time point. Four waves of AA testing were conducted. Thirteen out of the 17 participants preferred the AA over standard assessment as they regarded it more informative, but not too burdensome. Conclusion: The newly developed one-week AA of the EQ-5D-5L captures within-day and day-to-day health fluctuations in people with MS. From the patients’ perspective, it is a feasible and face valid way to provide important information beyond what is captured by the standard EQ-5D-5L.

Original languageEnglish
Pages (from-to)2081-2096
Number of pages16
JournalQuality of Life Research
Volume30
Issue number7
DOIs
Publication statusPublished - 12 Mar 2021

Bibliographical note

Funding Information:
Open Access funding enabled and organized by Projekt DEAL. This research was funded by the EuroQol Research Foundation, EQ Project 201660. The views expressed by the authors in this publication do not necessarily reflect the views of the EuroQol Group.

Funding Information:
The University of Sheffield was paid by the EuroQol Research Foundation for the time of JC and JB. The University Medical Center Hamburg-Eppendorf was paid by the EuroQol Research Foundation for the time of CB and CH. MFJ has received research funding from the EuroQol Research Foundation for this project. AL has received research funding from the EuroQol Research Foundation for this project. MO has no conflict of interest to declare.

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

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