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P241 Defining patient-centered outcomes for IBD – an international, cross-disciplinary consensus

Kim A.*1, Roberts C.2, Feagan B.3, Banerjee R.4, Bemelman W.5, Bodger K.6,7, Derieppe M.8, Dignass A.9, Driscoll R.10, Fitzpatrick R.11, Higgins P.12, Kotze P.13, Meissner J.14, O'Connor M.15, Ran Z.-H.16, Siegel C.17, Terry H.18, van Deen W.19,20, van der Woude C.21, Weaver A.14, Yang S.-K.22, Sands B.23, Vermeire S.24, Travis S.1

1Translational Gastroenterology Unit, Oxford, United Kingdom 2International Consortium for Health Outcomes Measurement, London, United Kingdom 3University of Western Ontario, Department of Medicine, London, Canada 4Asian Institute of Gastroenterology, Hyderabad, India 5Academic Medical Center, Department of Surgery, Amsterdam, Netherlands 6Institute of Translational Medicine, University of Liverpool, Department of Gastroenterology, Liverpool, United Kingdom 7UK Digestive Diseases Centre, Aintree University Hospitals NHS Trust, Liverpool, United Kingdom 8Association François Aupetit, Paris, France 9Agaplesion Markus Hospital, Goethe-University, Department of Medicine I, Frankfurt am Main, Germany 10Health Quality Improvement Partnership, London, United Kingdom 11University of Oxford, Oxford, United Kingdom 12University of Michigan Medical School, Department of Internal Medicine, Michigan, United States 13Catholic University of Parana, Curitiba, Brazil 14Crohn's and Colitis Foundation of America, New York, United States 15St Mark's Hospital, London Northwest Healthcare NHS Trust, London, United Kingdom 16Ren Ji Hospital, Shanghai Jiatong University, Department of Gastroenterology, School of Medicine, Shanghai, China 17Dartmouth-Hitchcock Medical Center, Department of Gastroenterology, Lebanon, United States 18Crohn's and Colitis UK, St Albans, United Kingdom 19UCLA Center for Inflammatory Bowel Diseases, Los Angeles, United States 20USC Gehr Family Center for Implementation Science, Los Angeles, United States 21Erasmus University Medical Centre, Rotterdam, Netherlands 22University of Ulsan College of Medicine, Asan Medical Center, Department of Gastroenterology, Seoul, South Korea 23Icahn School of Medicine at Mount Sinai, New York, United States 24University Hospitals Leuven, Department of Gastroenterology & Hepatology, Leuven, Belgium


Value-based healthcare aims to achieve the best possible health outcomes for the lowest cost. Key to its success involves measuring outcomes that matter most to patients. Currently for inflammatory bowel disease (IBD), registries and clinical trials lack a unifying set of well-defined outcomes, making comparisons between populations difficult. Our goal was to develop a minimum Standard Set of patient-centered outcomes for IBD to provide a common language for outcomes that can be tracked systematically in a variety of healthcare settings.


An international, multidisciplinary working group (n=25) from 12 countries within Europe, North America, Asia, Australia, and South America representing patients, gastroenterologists, surgeons, specialist nurses, IBD registries, patient-reported outcome measure (PROM) methodologists, and patient organisations participated in a series of teleconferences incorporating a modified Delphi process. Systematic review of existing literature, registry data, patient focus groups and open review periods were used to reach consensus on a minimum set of standard outcome measures, the best validated tools for measurement and baseline risk-adjustment variables.


A minimum Standard Set of outcomes (Figure 1), preferred tools and measurement frequency was defined by the Working Group for patients (aged ≥16) with IBD. Outcome domains included patient reported outcomes (including quality of life, symptom score, nutritional status and impact of fistulae); survival and disease control (survival, disease activity/remission, colorectal cancer, and anaemia); disutility of care (treatment-related complications); and healthcare utilisation (IBD-related admissions and emergency room visits), all measured at baseline and 6 or 12 month intervals. A single, accessible PROM (IBD-Control questionnaire) was recommended. A core set of patients' baseline characteristics including demographics, baseline clinical and condition factors, and treatment factors were further defined for collection at baseline and tracking annually to enable meaningful comparisons of outcomes between centres, regions, or countries.

Figure 1. ICHOM standard set for inflammatory bowel disease.


An international, multidisciplinary IBD Working Group that included patients has defined a minimum set of patient-centred outcomes, tools and PROMs for collection in patients with IBD based on evidence, patient input, and specialist consensus. The Standard Set provides a template for meaningful, comparable and easy-to-interpret measures as a step towards achieving value-based healthcare in IBD.