{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T04:34:47Z","timestamp":1791952487308,"version":"4.3.4"},"reference-count":22,"publisher":"Oxford University Press (OUP)","issue":"1","license":[{"start":{"date-parts":[[2025,1,25]],"date-time":"2025-01-25T00:00:00Z","timestamp":1737763200000},"content-version":"vor","delay-in-days":26,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["K23DK127157-01[ELB]"],"award-info":[{"award-number":["K23DK127157-01[ELB]"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"name":"University of North Carolina School of Medicine Physician Scientist Training Program Faculty Award"},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["UM1TR004406"],"award-info":[{"award-number":["UM1TR004406"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,12,30]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>The patient experience after ileal pouch-anal anastomosis (IPAA) for ulcerative colitis (UC) remains poorly defined, resulting in heterogeneity in clinical assessments and research. We performed a qualitative study to better understand the experience of patients after IPAA for UC, with a focus on the symptoms experienced by patients and the resultant effects on quality of life (QoL).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>We conducted semi-structured focus groups among patients who had undergone IPAA for UC. We invited patients with a variety of pouch-related conditions, including patients reporting normal pouch function and those with diagnosed inflammatory conditions of the pouch. We included questions on patients\u2019 experiences and symptoms after IPAA based on 4 thematic areas identified by a previously performed systematic review: bowel symptoms, activities, general issues and quality of life, and psychosocial.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>We interviewed 15 individuals over the course of 4 focus groups. Participants described the significant impact that bowel symptoms after IPAA had on other activities including work and daily life, and their subsequent relation to QoL themes. Participants noted symptoms of frequency, urgency, and incontinence after IPAA, and many shared how these symptoms required them to change their lifestyle, particularly by altering their daily schedule or changing their diet. Nevertheless, most participants reported QoL improvement after IPAA.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>In this qualitative study evaluating the experience of patients after IPAA, multiple bowel-related symptoms impact other areas of life and overall QoL. Patients undergoing IPAA for UC represent a unique patient population, and thus patient-centered outcome measures should be designed to standardize their assessment.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/crocol\/otaf007","type":"journal-article","created":{"date-parts":[[2025,1,25]],"date-time":"2025-01-25T11:59:08Z","timestamp":1737806348000},"source":"Crossref","is-referenced-by-count":2,"title":["Understanding the Lived Experience After Colectomy and Ileal Pouch-Anal Anastomosis for Ulcerative Colitis: A Qualitative Study"],"prefix":"10.1093","volume":"7","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9894-8796","authenticated-orcid":false,"given":"Edward L","family":"Barnes","sequence":"first","affiliation":[{"name":"Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]},{"name":"Multidisciplinary Center for Inflammatory Bowel Diseases, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]},{"name":"Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marcella H","family":"Boynton","sequence":"additional","affiliation":[{"name":"Division of General Medicine and Clinical Epidemiology, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Darren A","family":"DeWalt","sequence":"additional","affiliation":[{"name":"Division of General Medicine and Clinical Epidemiology, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erica","family":"Brenner","sequence":"additional","affiliation":[{"name":"Multidisciplinary Center for Inflammatory Bowel Diseases, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]},{"name":"Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]},{"name":"Division of Pediatric Gastroenterology, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4268-823X","authenticated-orcid":false,"given":"Hans H","family":"Herfarth","sequence":"additional","affiliation":[{"name":"Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]},{"name":"Multidisciplinary Center for Inflammatory Bowel Diseases, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]},{"name":"Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael D","family":"Kappelman","sequence":"additional","affiliation":[{"name":"Multidisciplinary Center for Inflammatory Bowel Diseases, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]},{"name":"Center for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]},{"name":"Division of Pediatric Gastroenterology, University of North Carolina at Chapel Hill , Chapel Hill, NC ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2025,1,25]]},"reference":[{"issue":"8","key":"2025021111261837500_CIT0001","doi-asserted-by":"publisher","first-page":"1044","DOI":"10.1016\/j.gastha.2023.07.010","article-title":"Patient reported outcome assessments used in the evaluation of patients after ileal pouch-anal","volume":"2","author":"Barnes","year":"2023","journal-title":"Gastro Hep 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functional outcome and quality of life after stapled restorative proctocolectomy","volume":"230","author":"Fazio","year":"1999","journal-title":"Ann Surg."},{"issue":"4","key":"2025021111261837500_CIT0005","doi-asserted-by":"publisher","first-page":"679","DOI":"10.1097\/SLA.0b013e31827d99a2","article-title":"Ileal pouch anal anastomosis: analysis of outcome and quality of life in 3707 patients","volume":"257","author":"Fazio","year":"2013","journal-title":"Ann Surg."},{"issue":"1","key":"2025021111261837500_CIT0006","doi-asserted-by":"publisher","first-page":"87","DOI":"10.1097\/DCR.0000000000002663","article-title":"Development and validation of a symptom-based scoring system for bowel dysfunction after ileoanal pouch reconstruction: the ileoanal pouch syndrome severity score","volume":"66","author":"Cavallaro","year":"2023","journal-title":"Dis Colon 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Reliability and validity in a patient population","volume":"26","author":"Stewart","year":"1988","journal-title":"Med Care."},{"key":"2025021111261837500_CIT0008","volume-title":"The Discovery of Grounded Theory: Strategies for Qualitative Research","author":"Glaser","year":"1967"},{"issue":"5","key":"2025021111261837500_CIT0009","doi-asserted-by":"publisher","first-page":"e0232076","DOI":"10.1371\/journal.pone.0232076","article-title":"A simple method to assess and report thematic saturation in qualitative research","volume":"15","author":"Guest","year":"2020","journal-title":"PLoS One."},{"issue":"6","key":"2025021111261837500_CIT0010","doi-asserted-by":"publisher","first-page":"O136","DOI":"10.1111\/codi.12948","article-title":"Difference between patients\u2019 and clinicians\u2019 perception of pouch dysfunction and its impact on quality of life following restorative proctocolectomy","volume":"17","author":"Brandsborg","year":"2015","journal-title":"Colorectal Dis."},{"issue":"4","key":"2025021111261837500_CIT0011","doi-asserted-by":"publisher","first-page":"615","DOI":"10.1097\/01.sla.0000141157.32234.9d","article-title":"The effect of ageing on function and quality of life in ileal pouch patients: a single cohort experience of 409 patients with chronic ulcerative colitis","volume":"240","author":"Hahnloser","year":"2004","journal-title":"Ann Surg."},{"issue":"5","key":"2025021111261837500_CIT0012","doi-asserted-by":"publisher","first-page":"781","DOI":"10.1097\/MIB.0000000000001061","article-title":"Results at up to 30 years after ileal pouch-anal anastomosis for chronic ulcerative colitis","volume":"23","author":"Lightner","year":"2017","journal-title":"Inflamm Bowel Dis."},{"issue":"12","key":"2025021111261837500_CIT0013","doi-asserted-by":"publisher","first-page":"e719","DOI":"10.1111\/codi.12425","article-title":"Restorative proctocolectomy for ulcerative colitis: development and validation of a new scoring system for pouch dysfunction and quality of life","volume":"15","author":"Brandsborg","year":"2013","journal-title":"Colorectal Dis."},{"key":"2025021111261837500_CIT0014","volume-title":"Guidance for industry. Patient-reported outcome measures: use in medical product development to support labeling claims.","author":"US Food and Drug Administration","year":"2009"},{"issue":"1","key":"2025021111261837500_CIT0015","first-page":"30","article-title":"Quality of life after ileal pouch-anal anastomosis: an evaluation of diet and other factors using the Cleveland Global Quality of Life instrument","volume":"45","author":"Coffey","year":"2002","journal-title":"Dis Colon Rectum."},{"issue":"2","key":"2025021111261837500_CIT0016","doi-asserted-by":"publisher","first-page":"153","DOI":"10.1093\/ecco-jcc\/jjz136","article-title":"Diet-microbiome interactions and the risk of pouchitis in ileal pouch-anal anastomosis","volume":"14","author":"Whelan","year":"2020","journal-title":"J Crohns Colitis."},{"issue":"7","key":"2025021111261837500_CIT0017","doi-asserted-by":"publisher","first-page":"3183","DOI":"10.1007\/s00394-019-02158-3","article-title":"Adherence to the Mediterranean diet is associated with decreased fecal calprotectin in patients with ulcerative colitis after pouch surgery","volume":"59","author":"Godny","year":"2020","journal-title":"Eur J Nutr."},{"issue":"10","key":"2025021111261837500_CIT0018","doi-asserted-by":"publisher","first-page":"1265","DOI":"10.1093\/ecco-jcc\/jjz053","article-title":"Fruit consumption is associated with alterations in microbial composition and lower rates of pouchitis","volume":"13","author":"Godny","year":"2019","journal-title":"J Crohns Colitis."},{"issue":"4","key":"2025021111261837500_CIT0019","doi-asserted-by":"publisher","first-page":"742","DOI":"10.1093\/ibd\/izy370","article-title":"Starch consumption may modify Antiglycan antibodies and fecal fungal composition in patients with Ileo-anal pouch","volume":"25","author":"Goren","year":"2019","journal-title":"Inflamm Bowel Dis."},{"issue":"1","key":"2025021111261837500_CIT0020","doi-asserted-by":"publisher","first-page":"246","DOI":"10.1093\/ibd\/izae037","article-title":"Dietary interventions and supplementation in patients with an Ileal pouch-anal anastomosis: a systematic review","volume":"31","author":"Gold","year":"2024","journal-title":"Inflamm Bowel Dis."},{"issue":"3","key":"2025021111261837500_CIT0021","doi-asserted-by":"publisher","first-page":"otad039","DOI":"10.1093\/crocol\/otad039","article-title":"Dietary patterns are not associated with disease activity among patients with inflammatory conditions of the pouch in a prospective cohort","volume":"5","author":"Barnes","year":"2023","journal-title":"Crohns Colitis 360"},{"issue":"6","key":"2025021111261837500_CIT0022","doi-asserted-by":"publisher","first-page":"1654","DOI":"10.1016\/j.cgh.2022.03.049","article-title":"The effect of the crohn\u2019s disease exclusion diet on patients with pouch inflammation: an interventional pilot study","volume":"21","author":"Fliss Isakov","year":"2023","journal-title":"Clin Gastroenterol Hepatol."}],"container-title":["Crohn's &amp; Colitis 360"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/crohnscolitis360\/advance-article-pdf\/doi\/10.1093\/crocol\/otaf007\/61625235\/otaf007.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/crohnscolitis360\/advance-article-pdf\/doi\/10.1093\/crocol\/otaf007\/61625235\/otaf007.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/crohnscolitis360\/advance-article-pdf\/doi\/10.1093\/crocol\/otaf007\/61625235\/otaf007.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,2,11]],"date-time":"2025-02-11T11:26:42Z","timestamp":1739273202000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/crohnscolitis360\/article\/doi\/10.1093\/crocol\/otaf007\/7979173"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,12,30]]},"references-count":22,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2024,12,30]]}},"URL":"https:\/\/doi.org\/10.1093\/crocol\/otaf007","relation":{},"ISSN":["2631-827X"],"issn-type":[{"value":"2631-827X","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2025,1]]},"published":{"date-parts":[[2024,12,30]]},"article-number":"otaf007"}}