P262 Systematic review of development and content validity of patient-reported outcome measures in inflammatory bowel disease: do we measure what we measure?
E. van Andel*1, B. Koopmann1, D. van Asseldonk1, N. de Boer2, L. Mokkink3, C. Noomen1
1Northwest Clinics, Department of Gastroenterology and Hepatology, Alkmaar, The Netherlands, 2Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Gastroenterology and Hepatology, Amsterdam Gastroenterology and Metabolism Research Institute, Amsterdam, The Netherlands, 3Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Epidemiology and Biostatistics, EMGO Institute for Health and Care Research, Amsterdam, The Netherlands
Patient-reported outcome measures (PROMs) are increasingly important in IBD-research and daily care. Many commonly used PROMs predate the current standards for development. This review summarises the evidence on development and content validity of IBD-specific PROMs.
MEDLINE, EMBASE and PsycINFO were searched up to July 2017 using the combined concepts: adults, IBD, PROMs, psychometric properties. Articles were included if the PROM is IBD-specific, measures a form of disability, QOL or disease activity and its development and/or content validity was reported. Evidence was synthesised according to the COSMIN methodology for development and content validity (relevance/comprehensiveness/comprehensibility), using a modified GRADE approach.1
From 4673 screened hits, 45 eligible articles were identified representing 32 PROMs. Three PROMs measure a form of disability, 10 disease activity and 19 QOL. The development process was reviewed for 21 PROMs, the remaining 11 are modifications for which the development study of the original was used. The development studies were of doubtful (
Most of the identified IBD-related PROMs do not meet current standards for development. Content validity studies are scarce and poorly described resulting in a limited body of evidence. There is some evidence for comprehensibility in IBD-specific PROMs, future studies should also focus on relevance and comprehensiveness to strengthen content validity.
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2. Guyatt G, Mitchell A, Irvine EJ,
3. Bernklev T, Moum B, Moum T,
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5. de Boer AG, Wijker W, Bartelsman JF,
6. Cheung WY, Garratt AM, Russell IT,
7. Love JR, Irvine EJ, Fedorak RN. Quality of life in inflammatory bowel disease.