Developing a Standard Set of Patient-Centred Outcomes for Inflammatory Bowel Disease-an International, Cross-disciplinary Consensus
| Autor: | Charlotte Roberts, Corey A. Siegel, Axel Dignass, Richard Driscoll, Paulo Gustavo Kotze, Marian O'Connor, Severine Vermeire, Helen Terry, C. Janneke van der Woude, Alandra Weaver, Rupa Banerjee, Keith Bodger, Willem A. Bemelman, Bruce E. Sands, Andrew H. Kim, Simon Travis, Welmoed K. van Deen, Ray Fitzpatrick, Zhihua Ran, Janette Gaarentstroom-Lunt, Brian G. Feagan, Suk-Kyun Yang, Peter D.R. Higgins, Jillian Meissner, Marc Derieppe |
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| Přispěvatelé: | Gastroenterology & Hepatology, AGEM - Digestive immunity, Surgery, AGEM - Re-generation and cancer of the digestive system |
| Rok vydání: | 2018 |
| Předmět: |
Adult
Male medicine.medical_specialty Consensus Internationality Quality management Adolescent Delphi Technique MEDLINE Nutritional Status Prom Disease Young Adult 03 medical and health sciences Patient Admission 0302 clinical medicine Quality of life (healthcare) Health care Intestinal Fistula medicine Humans Patient Reported Outcome Measures 030212 general & internal medicine Young adult Survival rate Aged Aged 80 and over business.industry Gastroenterology Anemia General Medicine Middle Aged Inflammatory Bowel Diseases Patient Outcome Assessment Survival Rate Family medicine Disease Progression Quality of Life Health Resources Female Interdisciplinary Communication 030211 gastroenterology & hepatology Colorectal Neoplasms Emergency Service Hospital business |
| Zdroj: | Journal of Crohn's and Colitis, 12(4), 408-418. Oxford University Press Journal of Crohn s & colitis, 12(4), 408-418. Elsevier Journal of Crohn's & colitis |
| ISSN: | 1873-9946 |
| Popis: | 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 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. 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. (248 words). |
| Databáze: | OpenAIRE |
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