SynthesisJournal of Crohn's & colitis2020
Systematic Review of Development and Content Validity of Patient-reported Outcome Measures in Inflammatory Bowel Disease: Do We Measure What We Measure?
Synthesis in Journal of Crohn's & colitis, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 5 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
20 citing papers in PubMed, 5 syntheses or guidelines pooled it, 31 citations in OpenAlex.
- Patient-reported outcome measures poorly correlate with objective inflammatory bowel disease activity measures: a systematic review.Journal of Crohn's & colitis · 2025Pooled it
- Anti-IL-12/23p40 antibodies for induction of remission in Crohn's disease.The Cochrane database of systematic reviews · 2025Pooled it
- Pooled it
- Measurement of compassion fatigue in animal health care professionals: a systematic review of available instruments and their content validity.Frontiers in veterinary science · 2024Pooled it
- A Systematic Review on Long-Term Efficacy Outcome Measures in Crohn's Disease Patients.Journal of Crohn's & colitis · 2023Pooled it
- The 2026 IBD UK Standards of healthcare service design and delivery for adults and children living with Crohn's disease and ulcerative colitis.BMJ open gastroenterology · 2026Article
- Current paradigms in the management of inflammatory bowel disease.Singapore medical journal · 2025Article
- Association Between Ethnicity and Treatment Preferences in Patients with Irritable Bowel Syndrome.Rambam Maimonides medical journal · 2025Article
- Proposal and exploration of a novel score to quantify patient-perceived burden of inflammatory bowel disease under routine care.Internal medicine journal · 2025Article
- COSMIN guideline for systematic reviews of patient-reported outcome measures version 2.0.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Article
- Development and validation of a 13-item short version of the inflammatory bowel disease self-efficacy scale.BMC gastroenterology · 2024Article
- Patient-Reported Outcomes in Colorectal Surgery.Clinics in colon and rectal surgery · 2023Review
- Impact of puberty, sex determinants and chronic inflammation on cardiovascular risk in young people.Frontiers in cardiovascular medicine · 2023Review
- Do inflammatory bowel disease patient preferences from treatment outcomes differ by ethnicity and gender? A cross-sectional observational study.World journal of clinical cases · 2022Article
- Ulcerative Colitis and Acute Severe Ulcerative Colitis Patients Are Overlooked in Infliximab Population Pharmacokinetic Models: Results from a Comprehensive Review.Pharmaceutics · 2022Review
- Impaired Quality of Working Life in Inflammatory Bowel Disease Patients.Digestive diseases and sciences · 2021Article
- Role of Quality of Life as Endpoint for Inflammatory Bowel Disease Treatment.International journal of environmental research and public health · 2021Review
- Remote Monitoring of Inflammatory Bowel Disease: What Kind of Patient-Reported Questionnaires Should We Use?Journal of Crohn's & colitis · 2021Article
- Patient Reported Outcomes in Chronic Inflammatory Diseases: Current State, Limitations and Perspectives.Frontiers in immunology · 2021Review
Corrections and comments
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Authors and funding
7 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
aimsPatient-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.
methodsDatabases 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.
resultsFor 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.
conclusionsThe 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.