Andrew H Kim1, Charlotte Roberts2, Brian G Feagan3, Rupa Banerjee4, Willem Bemelman5, Keith Bodger6,7, Marc Derieppe8, Axel Dignass9, Richard Driscoll10, Ray Fitzpatrick11, Janette Gaarentstroom-Lunt12, Peter D Higgins13, Paulo Gustavo Kotze14, Jillian Meissner15, Marian O'Connor16, Zhi-Hua Ran17, Corey A Siegel18, Helen Terry19, Welmoed K van Deen20,21, C Janneke van der Woude22, Alandra Weaver23, Suk-Kyun Yang24, Bruce E Sands25, Séverine Vermeire26, Simon Pl Travis1. 1. Translational Gastroenterology Unit, John Radcliffe Hospital, Oxford, UK. 2. International Consortium for Health Outcomes Measurement, London, UK. 3. Department of Medicine, University of Western Ontario, London, Ontario, Canada. 4. Asian Institute of Gastroenterology, Hyderabad, India. 5. Department of Surgery, Academic Medical Center, Amsterdam, The Netherlands. 6. Department of Biostatistics, Institute of Translational Medicine, University of Liverpool, Liverpool, UK. 7. Digestive Diseases Unit, Aintree University Hospital, Liverpool, UK. 8. Association François Aupetit, France. 9. Department of Medicine I, Agaplesion Markus Hospital, Goethe-University, Frankfurt am Main, Germany. 10. Health Quality Improvement Partnership, UK. 11. University of Oxford, Oxford, UK. 12. Department of Gastroenterology and Hepatology, University Medical Center Utrecht, Utrecht, The Netherlands. 13. Department of Internal Medicine, University of Michigan Medical School, Michigan, Ann Arbor, MI, USA. 14. Catholic University of Parana, Curitiba, Brazil. 15. Crohn's and Colitis Foundation of America. 16. St Mark's Hospital, London Northwest Healthcare NHS Trust, UK. 17. Key Laboratory of Gastroenterology & Hepatology Ministry of Health, Division of Gastroenterology and Hepatology, Ren Ji Hospital, School of Medicine, Shanghai Jiao Tong University, Shanghai Institute of Digestive Disease, Shanghai Inflammatory Bowel Disease Research Center, Shanghai, China. 18. Department of Gastroenterology, Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire, USA. 19. Crohn's and Colitis UK, St Albans, Hertfordshire, UK. 20. UCLA Center for Inflammatory Bowel Diseases, Division of Digestive Diseases, David Geffen School of Medicine, University of California, Los Angeles, CA, USA. 21. USC Gehr Family Center for Implementation Science, Los Angeles, CA, USA. 22. Erasmus University Medical Centre, Erasmus University, Rotterdam, The Netherlands. 23. Crohn's and Colitis Foundation of America, USA. 24. Department of Gastroenterology, University of Ulsan College of Medicine, Asan Medical Center, Seoul, Republic of Korea. 25. Icahn School of Medicine at Mount Sinai, New York, NY, USA. 26. Department of Gastroenterology & Hepatology, University Hospitals Leuven, Leuven, Belgium.
Abstract
BACKGROUND AND AIMS: 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. METHODS: 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]. RESULTS: 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. CONCLUSIONS: 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.
BACKGROUND AND AIMS: 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. METHODS: 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]. RESULTS: 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. CONCLUSIONS: 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.
Authors: G Pellino; D S Keller; G M Sampietro; V Annese; M Carvello; V Celentano; C Coco; F Colombo; N Cracco; F Di Candido; M Franceschi; S Laureti; G Mattioli; L Pio; G Sciaudone; G Sica; V Villanacci; R Zinicola; S Leone; S Danese; A Spinelli; G Delaini; F Selvaggi Journal: Tech Coloproctol Date: 2020-01-25 Impact factor: 3.781
Authors: Christopher Andrew Lamb; Nicholas A Kennedy; Tim Raine; Philip Anthony Hendy; Philip J Smith; Jimmy K Limdi; Bu'Hussain Hayee; Miranda C E Lomer; Gareth C Parkes; Christian Selinger; Kevin J Barrett; R Justin Davies; Cathy Bennett; Stuart Gittens; Malcolm G Dunlop; Omar Faiz; Aileen Fraser; Vikki Garrick; Paul D Johnston; Miles Parkes; Jeremy Sanderson; Helen Terry; Daniel R Gaya; Tariq H Iqbal; Stuart A Taylor; Melissa Smith; Matthew Brookes; Richard Hansen; A Barney Hawthorne Journal: Gut Date: 2019-09-27 Impact factor: 23.059
Authors: Zipporah Iheozor-Ejiofor; Morris Gordon; Andrew Clegg; Suzanne C Freeman; Teuta Gjuladin-Hellon; John K MacDonald; Anthony K Akobeng Journal: Cochrane Database Syst Rev Date: 2019-09-12
Authors: Rishi K Fofaria; Susan Barber; Yewande Adeleke; Tom Woodcock; Nikolaos Kamperidis; Alaa Mohamed; Ravi Misra; Ajit Shah; Susan Bailey-Fee; Howard Bluston; Denise Robinson; Tracey Tyrrell; Naila Arebi Journal: BMJ Open Qual Date: 2019-08-01
Authors: Olivia V Yvellez; Victoria Rai; Philip H Sossenheimer; John Hart; Jerrold R Turner; Christopher Weber; Katia El Jurdi; David T Rubin Journal: Inflamm Bowel Dis Date: 2021-01-19 Impact factor: 5.325
Authors: Peter Irving; Johan Burisch; Richard Driscoll; Mats Olsson; John R Fullarton; Barry S Rodgers-Gray; Simon Pl Travis Journal: Intest Res Date: 2018-10-10