Developing a Standard Set of Patient-Centred Outcomes for Inflammatory Bowel Disease—an International, Cross-disciplinary Consensus



Kim, Andrew H, Roberts, Charlotte, Feagan, Brian G, Banerjee, Rupa, Bemelman, Willem, Bodger, Keith ORCID: 0000-0002-1825-3239, Derieppe, Marc, Dignass, Axel, Driscoll, Richard, Fitzpatrick, Ray
et al (show 15 more authors) (2018) Developing a Standard Set of Patient-Centred Outcomes for Inflammatory Bowel Disease—an International, Cross-disciplinary Consensus. Journal of Crohn's & colitis, 12 (04). 408 - 418.

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Abstract

Success in delivering value-based healthcare involves measuring outcomes that matter most to patients. Our aim was to develop a minimum Standard Set of patient-centred outcome measures for inflammatory bowel disease (IBD), for use in different healthcare settings.An international working group (n=25) representing patients, patient associations, gastroenterologists, surgeons, specialist nurses, IBD registries and patient-reported outcome measure (PROM) methodologists 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 and risk adjustment variables. Similar methodology has been used in 21 other disease areas (www.ichom.org).A minimum Standard Set of outcomes was developed for patients (aged ≥16) with IBD. Outcome domains included survival and disease control (survival, disease activity/remission, colorectal cancer, anaemia), disutility of care (treatment-related complications), healthcare utilisation (IBD-related admissions, emergency room visits) and patient-reported outcomes (including quality of life, nutritional status and impact of fistulae) measured at baseline and at 6 or 12 month intervals. A single PROM (IBD-Control questionnaire) was recommended in the Standard Set and minimum risk adjustment data collected at baseline and annually were included: demographics, basic clinical information and treatment factors.A Standard Set of outcome measures for IBD has been developed based on evidence, patient input and specialist consensus. It provides an international template for meaningful, comparable and easy-to-interpret measures as a step towards achieving value-based healthcare in IBD.

Item Type: Article
Uncontrolled Keywords: Inflammatory bowel disease, patient reported outcomes, quality improvement
Depositing User: Symplectic Admin
Date Deposited: 02 Jan 2018 16:39
Last Modified: 09 Jan 2021 06:05
DOI: 10.1093/ecco-jcc/jjx161
Related URLs:
URI: https://livrepository.liverpool.ac.uk/id/eprint/3014742