Core Outcome Set for Inflammatory Bowel Diseases

Date and time:  Tuesday 20 May, 11:00 hours

Location: L1 Main Meeting Room, Richard Doll Building, Old Road Campus, Headington, OX3 7LF

To Join: This is a free event, which will be taking place both in-person and online via Zoom/Microsoft Teams. Register

Abstract: Background and aims: Standardising health outcome measurements supports delivery of care and enables data-driven learning systems and secondary data use for research. As part of the Health Outcomes Observatory [H2O] initiative, and building on existing knowledge, a core outcome set [COS] for inflammatory bowel diseases [IBD] was defined through an international modified Delphi method.

Methods: Stakeholders rated 90 variables on a 9-point importance scale twice, allowing score modification based on feedback displayed per stakeholder group. Two consecutive consensus meetings were held to discuss results and formulate recommendations for measurement in clinical practice. Variables scoring 7 or higher by ≥80% of the participants, or based on consensus meeting agreement, were included in the final set.
Results: In total, 136 stakeholders (45 IBD patients [advocates], 74 health care professionals/researchers, 13 industry representatives, and four regulators) from 20 different countries participated. The final set includes 18 case-mix variables, three biomarkers [haemoglobin to detect anaemia, C-reactive protein and faecal calprotectin to detect inflammation] for completeness, and 28 outcomes (including 16 patient-reported outcomes [PROs] and one patient-reported experience). The PRO-2 and IBD-Control questionnaires were recommended to collect disease-specific PROs at every contact with an IBD practitioner, and the Subjective Health Experience model questionnaire, PROMIS Global Health and Self-Efficacy short form, to collect generic PROs annually.
Conclusions: A COS for IBD, including a recommendation for use in clinical practice, was defined. Implementation of this set will start in Vienna, Berlin, Barcelona, Leuven, and Rotterdam, empowering patients to better manage their care. Additional centres will follow worldwide.

Bio: In 2019, Liselotte graduated with a degree in Biomedical Sciences from the Catholic University of Leuven, specialising in Management and Communication. Later that year, she deepened her focus on Inflammatory Bowel Disease (IBD)—the subject of her master’s thesis—by beginning a PhD with the Leuven IBD research group. After successfully defending her PhD in March 2024, which focused on improving quality of care for patients with IBD, Liselotte continued her work as a postdoctoral researcher within the same group. She is currently spending five months at the Health Economics Research Centre at the University of Oxford, where she is broadening her knowledge and expertise in health economics to support future research projects.