Developing a standard set of patient-centred outcomes for inflammatory bowel disease - an international, cross-disciplinary consensus
<p>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.</p...
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , , , |
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| Format: | Journal article |
| Language: | English |
| Published: |
Oxford University Press
2017
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| _version_ | 1826299416555814912 |
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| author | Kim, AH Roberts, C Feagan, BG Banerjee, R Bemelman, W Bodger, K Derieppe, M Dignass, A Driscoll, R Fitzpatrick, R Gaarentstroom-Lunt, J Higgins, PD Kotze, PG Meissner, J O'Connor, M Ran, Z-H Siegel, CA Terry, H van Deen, WK van der Woude, CJ Weaver, A Yang, S-K Sands, BE Vermeire, S Travis, SP |
| author_facet | Kim, AH Roberts, C Feagan, BG Banerjee, R Bemelman, W Bodger, K Derieppe, M Dignass, A Driscoll, R Fitzpatrick, R Gaarentstroom-Lunt, J Higgins, PD Kotze, PG Meissner, J O'Connor, M Ran, Z-H Siegel, CA Terry, H van Deen, WK van der Woude, CJ Weaver, A Yang, S-K Sands, BE Vermeire, S Travis, SP |
| author_sort | Kim, AH |
| collection | OXFORD |
| description | <p>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.</p><p> 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). </p><p>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.</p><p> 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).</p> |
| first_indexed | 2024-03-07T05:01:37Z |
| format | Journal article |
| id | oxford-uuid:d877f511-2182-44b4-a815-00f1a40eb01b |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-03-07T05:01:37Z |
| publishDate | 2017 |
| publisher | Oxford University Press |
| record_format | dspace |
| spelling | oxford-uuid:d877f511-2182-44b4-a815-00f1a40eb01b2022-03-27T08:48:57ZDeveloping a standard set of patient-centred outcomes for inflammatory bowel disease - an international, cross-disciplinary consensusJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:d877f511-2182-44b4-a815-00f1a40eb01bEnglishSymplectic Elements at OxfordOxford University Press2017Kim, AHRoberts, CFeagan, BGBanerjee, RBemelman, WBodger, KDerieppe, MDignass, ADriscoll, RFitzpatrick, RGaarentstroom-Lunt, JHiggins, PDKotze, PGMeissner, JO'Connor, MRan, Z-HSiegel, CATerry, Hvan Deen, WKvan der Woude, CJWeaver, AYang, S-KSands, BEVermeire, STravis, SP<p>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.</p><p> 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). </p><p>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.</p><p> 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).</p> |
| spellingShingle | Kim, AH Roberts, C Feagan, BG Banerjee, R Bemelman, W Bodger, K Derieppe, M Dignass, A Driscoll, R Fitzpatrick, R Gaarentstroom-Lunt, J Higgins, PD Kotze, PG Meissner, J O'Connor, M Ran, Z-H Siegel, CA Terry, H van Deen, WK van der Woude, CJ Weaver, A Yang, S-K Sands, BE Vermeire, S Travis, SP Developing a standard set of patient-centred outcomes for inflammatory bowel disease - an international, cross-disciplinary consensus |
| title | Developing a standard set of patient-centred outcomes for inflammatory bowel disease - an international, cross-disciplinary consensus |
| title_full | Developing a standard set of patient-centred outcomes for inflammatory bowel disease - an international, cross-disciplinary consensus |
| title_fullStr | Developing a standard set of patient-centred outcomes for inflammatory bowel disease - an international, cross-disciplinary consensus |
| title_full_unstemmed | Developing a standard set of patient-centred outcomes for inflammatory bowel disease - an international, cross-disciplinary consensus |
| title_short | Developing a standard set of patient-centred outcomes for inflammatory bowel disease - an international, cross-disciplinary consensus |
| title_sort | developing a standard set of patient centred outcomes for inflammatory bowel disease an international cross disciplinary consensus |
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