{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,9,26]],"date-time":"2025-09-26T08:06:21Z","timestamp":1758873981278,"version":"3.41.2"},"reference-count":22,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2023,9,18]],"date-time":"2023-09-18T00:00:00Z","timestamp":1694995200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100011684","name":"Crohn's and Colitis Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100011684","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,10,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Although it is a truism that drugs benefit patients only when taken, surprisingly little is known about real-world drug-use persistence and discontinuation, even for expensive biologic drugs.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>We used longitudinal self-reported drug-use data from the inflammatory bowel disease (IBD) Partners registry of people with IBD to construct Kaplan\u2013Meier drug-use persistency graphs for biologic drug-use spans that started between 2017 and 2022.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>We examined 2034 drug-use spans for 1594 survey participants. Most of the biologic drugs had a 75%+ persistency rate around the one-year mark and 60%+ persistency at the 3-year mark. The overall persistency and the differences in persistency between drugs were aligned with published literature.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>This analysis demonstrates the feasibility of collecting IBD-specific patient-reported drug persistency data via a voluntary patient registry. Patient-reported persistency provides real-world drug persistency data and the patient\u2019s perspectives as to why they discontinued use of the drug\u2014a combination of data and perspective that is not available from any other real-world medical record, claim, and pharmacy data source that are valuable to physician, patients, payers, healthcare policymakers, and health technology assessment organizations.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/crocol\/otad051","type":"journal-article","created":{"date-parts":[[2023,9,18]],"date-time":"2023-09-18T09:06:32Z","timestamp":1695027992000},"source":"Crossref","is-referenced-by-count":3,"title":["Real-World Persistency for Inflammatory Bowel Disease Biologics Using Patient Registry Data"],"prefix":"10.1093","volume":"5","author":[{"given":"Tia","family":"Goss Sawhney","sequence":"first","affiliation":[{"name":"Teus Health, LLC , Newark, NJ , USA"},{"name":"New York University, School of Global Public Health , New York, NY , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-9003-5818","authenticated-orcid":false,"given":"Angela","family":"Dobes","sequence":"additional","affiliation":[{"name":"Crohn\u2019s & Colitis Foundation , New York, NY , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sirimon","family":"O\u2019Charoen","sequence":"additional","affiliation":[{"name":"Crohn\u2019s & Colitis Foundation , New York, NY , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2023,9,18]]},"reference":[{"volume-title":"CMS Finalizes Medicare Coverage Policy for Monoclonal Antibodies Directed Against Amyloid for the Treatment of Alzheimer\u2019s Disease","year":"2022","key":"2023110712311847900_CIT0001"},{"issue":"9","key":"2023110712311847900_CIT0002","doi-asserted-by":"crossref","first-page":"1129","DOI":"10.1016\/j.acra.2014.05.008","article-title":"Including patient-reported outcomes and patient-reported resource-use questionnaires in studies","volume":"21","author":"Bresnahan","year":"2014","journal-title":"Acad Radiol."},{"issue":"4","key":"2023110712311847900_CIT0003","doi-asserted-by":"crossref","first-page":"610","DOI":"10.1016\/j.jval.2017.01.009","article-title":"Evaluation of noncompletion bias and long-term adherence in a 10-year patient-reported outcome monitoring program in clinical routine","volume":"20","author":"Gamper","year":"2017","journal-title":"Value Health"},{"author":"IBD Partners | Crohn\u2019s & Colitis Foundation","key":"2023110712311847900_CIT0004"},{"key":"2023110712311847900_CIT0005"},{"issue":"4","key":"2023110712311847900_CIT0006","first-page":"495","article-title":"Real-world evidence on adherence, persistence, switching and dose escalation with biologics in adult inflammatory bowel disease in the United States: a systematic review","volume":"44","author":"Khan","year":"2019","journal-title":"J Clin Pharm Ther."},{"issue":"8","key":"2023110712311847900_CIT0007","doi-asserted-by":"crossref","first-page":"1417","DOI":"10.1093\/ibd\/izz001","article-title":"Real-world pattern of biologic use in patients with inflammatory bowel disease: treatment persistence, switching, and importance of concurrent immunosuppressive therapy","volume":"25","author":"Chen","year":"2019","journal-title":"Inflamm Bowel Dis."},{"issue":"12","key":"2023110712311847900_CIT0008","doi-asserted-by":"crossref","first-page":"3280","DOI":"10.3390\/biomedicines10123280","article-title":"Effectiveness and safety profiles of biological therapies in inflammatory bowel disease: real life data from an active pharmacovigilance project","volume":"10","author":"Barbieri","year":"2022","journal-title":"Biomedicines"},{"year":"2018","key":"2023110712311847900_CIT0009"},{"issue":"3","key":"2023110712311847900_CIT0010","doi-asserted-by":"crossref","first-page":"331","DOI":"10.1016\/j.otohns.2010.05.007","article-title":"A practical guide to understanding Kaplan-Meier curves","volume":"143","author":"Rich","year":"2010","journal-title":"Otolaryngol Head Neck Surg"},{"issue":"9","key":"2023110712311847900_CIT0011","doi-asserted-by":"crossref","first-page":"1232","DOI":"10.1016\/j.dld.2019.05.002","article-title":"Effectiveness and safety of Ustekinumab for Crohn\u2019s disease; 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