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

• Published in: Journal of Crohn's and colitis 2018-03, Vol.12 (4), p.408-418
• Main Authors: Kim, Andrew H, Roberts, Charlotte, Feagan, Brian G, Banerjee, Rupa, Bemelman, Willem, Bodger, Keith, Derieppe, Marc, Dignass, Axel, Driscoll, Richard, Fitzpatrick, Ray, Gaarentstroom-Lunt, Janette, Higgins, Peter D, Kotze, Paulo Gustavo, Meissner, Jillian, O'Connor, Marian, Ran, Zhi-Hua, Siegel, Corey A, Terry, Helen, van Deen, Welmoed K, van der Woude, C Janneke, Weaver, Alandra, Yang, Suk-Kyun, Sands, Bruce E, Vermeire, Séverine, Travis, Simon Pl
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Aged; Aged, 80 and over; Anemia - etiology; Colorectal Neoplasms - etiology; Consensus; Delphi Technique; Disease Progression; Emergency Service, Hospital - statistics & numerical data; Female; Health Resources - statistics & numerical data; Humans; Inflammatory Bowel Diseases - complications; Inflammatory Bowel Diseases - therapy; Interdisciplinary Communication; Internationality; Intestinal Fistula - etiology; Male; Middle Aged; Nutritional Status; Patient Admission; Patient Outcome Assessment; Patient Reported Outcome Measures; Quality of Life; Survival Rate; Young Adult
• ISSN: 1873-9946; 1876-4479
• DOI: 10.1093/ecco-jcc/jjx161

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 utilization [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.