TY - JOUR
T1 - Systematic Review of Development and Content Validity of Patient-reported Outcome Measures in Inflammatory Bowel Disease
T2 - Do We Measure What We Measure?
AU - van Andel, Emma M
AU - Koopmann, Brechtje D M
AU - Crouwel, Femke
AU - Noomen, Casper G
AU - de Boer, Nanne K H
AU - van Asseldonk, Dirk P
AU - Mokkink, Lidwine B
N1 - Publisher Copyright: © The Author(s) 2020. Copyright: Copyright 2020 Elsevier B.V., All rights reserved.
PY - 2020/9/1
Y1 - 2020/9/1
N2 - BACKGROUND AND AIMS: Patient-reported outcome measures are increasingly important in daily care and research in inflammatory bowel disease [IBD]. This study provides an overview of the content and content validity of IBD-specific patient-reported outcome measures on three selected constructs.METHODS: Databases were searched up to May 2019 for development and/or content validity studies on IBD-specific self-report measures on health-related quality of life, disability, and self-report disease activity in adults. Evidence was synthesised on content validity in three aspects: relevance, comprehensiveness, and comprehensibility following the COnsensus-based Standards for the selection of health Measurement INstruments methodology. Questionnaire items were organised in themes to provide an overview of important aspects of these constructs.RESULTS: For 14/44 instruments, 25 content validity studies were identified and 25/44 measures had sufficient content validity, the strongest evidence being of moderate quality, though most evidence is of low or very low quality. The Crohn's Life Impact Questionnaire and IBD questionnaire-32 on quality of life, the IBD-Control on disease activity, and the IBD Disability Index Self-Report and its 8-item version on disability, have the strongest evidence of sufficient relevance, comprehensiveness, and comprehensibility, ranging from moderate to very low quality. A fair number of recurring items themes, possibly important for the selected constructs, was identified.CONCLUSIONS: The body of evidence for content validity of IBD-specific health-related quality of life, self-report disease activity, and disability self-report measures is limited. More content validity studies should be performed after reaching consensus on the constructs of interest for IBD, and studies should involve patients.
AB - BACKGROUND AND AIMS: Patient-reported outcome measures are increasingly important in daily care and research in inflammatory bowel disease [IBD]. This study provides an overview of the content and content validity of IBD-specific patient-reported outcome measures on three selected constructs.METHODS: Databases were searched up to May 2019 for development and/or content validity studies on IBD-specific self-report measures on health-related quality of life, disability, and self-report disease activity in adults. Evidence was synthesised on content validity in three aspects: relevance, comprehensiveness, and comprehensibility following the COnsensus-based Standards for the selection of health Measurement INstruments methodology. Questionnaire items were organised in themes to provide an overview of important aspects of these constructs.RESULTS: For 14/44 instruments, 25 content validity studies were identified and 25/44 measures had sufficient content validity, the strongest evidence being of moderate quality, though most evidence is of low or very low quality. The Crohn's Life Impact Questionnaire and IBD questionnaire-32 on quality of life, the IBD-Control on disease activity, and the IBD Disability Index Self-Report and its 8-item version on disability, have the strongest evidence of sufficient relevance, comprehensiveness, and comprehensibility, ranging from moderate to very low quality. A fair number of recurring items themes, possibly important for the selected constructs, was identified.CONCLUSIONS: The body of evidence for content validity of IBD-specific health-related quality of life, self-report disease activity, and disability self-report measures is limited. More content validity studies should be performed after reaching consensus on the constructs of interest for IBD, and studies should involve patients.
KW - Content validity
KW - Inflammatory bowel diseases
KW - Patient-reported outcome measures
UR - http://www.scopus.com/inward/record.url?scp=85091126705&partnerID=8YFLogxK
U2 - https://doi.org/10.1093/ecco-jcc/jjaa057
DO - https://doi.org/10.1093/ecco-jcc/jjaa057
M3 - Review article
C2 - 32211749
SN - 1873-9946
VL - 14
SP - 1299
EP - 1315
JO - Journal of Crohn's and Colitis
JF - Journal of Crohn's and Colitis
IS - 9
ER -