ArticleJournal of Crohn's & colitis2022
Patient-reported Outcomes: the ICHOM Standard Set for Inflammatory Bowel Disease in Real-life Practice Helps Quantify Deficits in Current Care.
Article in Journal of Crohn's & colitis, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed.
- Patient outcomes and healthcare utilisation following implementation of an advanced therapy care pathway for inflammatory bowel disease: a multicentre, prospective quasi-experimental preimplementation/postimplementation study in the Netherlands.BMJ open gastroenterology · 2026Article
- Advancing Predictive Modeling of Inflammatory Bowel Disease (IBD) Flares: A Data-Driven Approach Using Lifestyle and Psychosocial Factors from a Remote Monitoring Platform.Digestive diseases and sciences · 2026Observational
- Fatigue and mood disorders are highly prevalent in patients with inflammatory bowel disease: a single-centre, cross-sectional study using patient-reported outcomes.Internal medicine journal · 2026Article
- Review
- Digital patient-reported outcomes to evaluate treatment response to filgotinib in patients with ulcerative colitis.Patient related outcome measures · 2026Article
- Adherence to a care pathway for inflammatory bowel disease in the southwest region of the Netherlands: results of a mixed-methods implementation study.BMJ open quality · 2025Article
- Variation Between Hospitals in Outcomes and Costs of IBD Care: Results From the IBD Value Study.Inflammatory bowel diseases · 2025Article
- A Core Outcome Set for Inflammatory Bowel Diseases: Development and Recommendations for Implementation in Clinical Practice Through an International Multi-stakeholder Consensus Process.Journal of Crohn's & colitis · 2024Article
- Perspectives of Patients and Professionals on Implementing a Computer Adaptive Vision-Related Quality of Life Outcome (CAT-EyeQ) in Clinical Practice.Translational vision science & technology · 2024Article
- Validation of the IBD-Control Questionnaire across different sociodemographic and clinical subgroups: secondary analysis of a nationwide electronic survey.Journal of Crohn's & colitis · 2024Article
- Article
- Article
- Review
- The Real-World Global Use of Patient-Reported Outcomes for the Care of Patients With Inflammatory Bowel Disease.Crohn's & colitis 360 · 2023Article
- Validity of the self-administered comorbidity questionnaire in patients with inflammatory bowel disease.Therapeutic advances in gastroenterology · 2023Article
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Authors and funding
16 authors.
Funding
Abstract
backgroundPatient-reported outcome measures [PROMs] are key to documenting outcomes that matter most to patients and are increasingly important to commissioners of health care seeking value. We report the first series of the ICHOM Standard Set for Inflammatory Bowel Disease [IBD].
methodsPatients treated for ulcerative colitis [UC] or Crohn's disease [CD] in our centre were offered enrolment into the web-based TrueColours-IBD programme. Through this programme, e-mail prompts linking to validated questionnaires were sent for symptoms, quality of life, and ICHOM IBD outcomes.
resultsThe first 1299 consecutive patients enrolled [779 UC, 520 CD] were studied with median 270 days of follow-up (interquartile range [IQR] 116, 504). 671 [52%] were female, mean age 42 years (standard deviation [sd] 16), mean body mass index [BMI] 26 [sd 5.3]. At registration, 483 [37%] were using advanced therapies. Median adherence to fortnightly quality of life reporting and quarterly outcomes was 100% [IQR 48, 100%] and 100% [IQR 75, 100%], respectively. In the previous 12 months, prednisolone use was reported by 229 [29%] patients with UC vs 81 [16%] with CD, p <0.001; 202 [16%] for <3 months; and 108 [8%] for >3 months. An IBD-related intervention was reported by 174 [13%] patients, and 80 [6%] reported an unplanned hospital admission. There were high rates of fatigue [50%] and mood disturbance [23%].
conclusionsOutcomes reported by patients illustrate the scale of the therapeutic deficit in current care. Proof of principle is demonstrated that PROM data can be collected continuously with little burden on health care professionals. This may become a metric for quality improvement programmes or to compare outcomes.
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