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

TY - JOUR

T1 - How to measure fluctuating impairments in people with MS: development of an ambulatory assessment version of the EQ-5D-5L in an exploratory study

AU - Blome, Christine

AU - Carlton, Jill

AU - Heesen, Christoph

AU - Janssen, Mathieu F

AU - Lloyd, Andrew

AU - Otten, Marina

AU - Brazier, John

PY - 2021/7

Y1 - 2021/7

N2 - 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.

AB - 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.

KW - Adult

KW - Ambulatory Care/methods

KW - Female

KW - Focus Groups

KW - Humans

KW - Male

KW - Middle Aged

KW - Multiple Sclerosis/physiopathology

KW - Psychometrics/methods

KW - Quality of Life/psychology

KW - Retrospective Studies

KW - Young Adult

U2 - 10.1007/s11136-021-02802-8

DO - 10.1007/s11136-021-02802-8

M3 - SCORING: Journal article

C2 - 33710593

VL - 30

SP - 2081

EP - 2096

JO - QUAL LIFE RES

JF - QUAL LIFE RES

SN - 0962-9343

IS - 7

ER -