{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,5,10]],"date-time":"2025-05-10T10:40:07Z","timestamp":1746873607762,"version":"3.40.5"},"reference-count":32,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2025,1,11]],"date-time":"2025-01-11T00:00:00Z","timestamp":1736553600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Internal Medicine Journal"],"published-print":{"date-parts":[[2025,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>The burden of inflammatory bowel disease (IBD) is often reported on from a system or cost viewpoint. We created and explored a novel patient\u2010perceived burden of disease (PPBoD) score in a large Australasian cohort.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>To create and explore a novel patient\u2010perceived burden of disease (PPBoD) score in a large Australasian cohort, and correlate PPBoD scores with demographics, disease and treatment factors.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The Crohn Colitis Care Registry was interrogated in October 2023. Data from adults with IBD with an outpatient care encounter in the last 14 months among 17 centres were included. A novel PPBoD score was designed for ulcerative colitis (UC), Crohn disease (CD) and IBD\u2010unclassified (IBDU). Correlations between PPBoD scores and demographics, disease and treatment factors were examined.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Of those with adequate data, 46.7% (2653\/5685) had no PPBoD, 34.6% (1969\/5685) had mild, 11.3% (641\/5685) had moderate and 7.4% (422\/5685) had significant PPBoD. New Zealanders were more likely to have higher PPBoD compared to Australians (<jats:italic>P<\/jats:italic> =\u20090.047). Greater PPBoD was seen in patients with CD and IBDU compared to patients with UC (<jats:italic>P<\/jats:italic> &lt;\u20090.001) and females were more likely to have significant PPBoD (8.7%) than males (6.1%) (<jats:italic>P<\/jats:italic> &lt;\u20090.001). People with no or mild PPBoD were more likely to be on advanced therapies (55.7% and 59.5% respectively) than those with significant PPBoD (46.3%) (<jats:italic>P<\/jats:italic> &lt;\u20090.001). The proportion of people on advanced therapies in Australia was higher than in New Zealand (61.2% vs 38.5% respectively, <jats:italic>P<\/jats:italic> &lt;\u20090.001). Steroid usage was significantly higher in people with greater PPBoD (significant BoD 7.1% vs no BoD 1.1%; <jats:italic>P<\/jats:italic> &lt;\u20090.001).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Most of this real\u2010world care cohort had no or mild PPBoD. Data suggest that higher PPBoD levels may be resolved by appropriate therapeutic escalations.<\/jats:p><\/jats:sec>","DOI":"10.1111\/imj.16634","type":"journal-article","created":{"date-parts":[[2025,1,11]],"date-time":"2025-01-11T10:10:21Z","timestamp":1736590221000},"page":"589-598","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Proposal and exploration of a novel score to quantify patient\u2010perceived burden of inflammatory bowel disease under routine care"],"prefix":"10.1111","volume":"55","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1796-918X","authenticated-orcid":false,"given":"Joseph L.","family":"Pipicella","sequence":"first","affiliation":[{"name":"Crohn's Colitis Cure  Sydney New South Wales Australia"},{"name":"Medicine &amp; Health (South Western Sydney Clinical School) University of New South Wales  Sydney New South Wales Australia"},{"name":"Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group Ingham Institute for Applied Medical Research  Liverpool New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bonita","family":"Gu","sequence":"additional","affiliation":[{"name":"Medicine &amp; Health (South Western Sydney Clinical School) University of New South Wales  Sydney New South Wales Australia"},{"name":"Department of Gastroenterology and Hepatology Liverpool Hospital  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jack","family":"McNamara","sequence":"additional","affiliation":[{"name":"Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group Ingham Institute for Applied Medical Research  Liverpool New South Wales Australia"},{"name":"Department of Gastroenterology and Hepatology Liverpool Hospital  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"William","family":"Wilson","sequence":"additional","affiliation":[{"name":"Department of Surgical Specialties and Anesthesia Lyell McEwin Hospital  Adelaide South Australia Australia"},{"name":"Medical Information Office SA Health  Adelaide South Australia Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lyle J.","family":"Palmer","sequence":"additional","affiliation":[{"name":"School of Public Health University of Adelaide  Adelaide South Australia Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susan J.","family":"Connor","sequence":"additional","affiliation":[{"name":"Crohn's Colitis Cure  Sydney New South Wales Australia"},{"name":"Medicine &amp; Health (South Western Sydney Clinical School) University of New South Wales  Sydney New South Wales Australia"},{"name":"Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group Ingham Institute 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