{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T19:56:19Z","timestamp":1792007779831,"version":"4.4.0"},"reference-count":35,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2025,3,2]],"date-time":"2025-03-02T00:00:00Z","timestamp":1740873600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100020406","name":"Dr. Falk Pharma","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100020406","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Aliment Pharmacol Ther"],"published-print":{"date-parts":[[2025,5]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Background and Aims<\/jats:title><jats:p>Primary sclerosing cholangitis (PSC) is a rare, cholestatic liver condition that has a significant association with inflammatory bowel disease (IBD) and impaired health\u2010related quality of life (HRQOL). We aimed to characterise and compare validated PSC and IBD patient\u2010reported outcomes (PRO) and determine if PRO correlated with the severity of liver disease.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We conducted a multicentre, prospective cohort study in Australia enrolling adult patients with PSC from December 2019 to August 2023. Consecutive patients completed a baseline validated PSC PRO questionnaire and a short IBD questionnaire (SIBDQ) if they had concomitant IBD. Linear regression was used to explore factors associated with poor HRQOL and the association between each HRQOL domain and the severity of liver disease.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 55 PSC patients were included. Most patients were male (32\/55, 58%) with a median age of 44\u2009years and a median 7\u2009years of follow\u2010up from PSC diagnosis. Mental and physical fatigue were the most prominent PSC symptoms. All HRQOL domain scores except PSC symptoms were significantly associated with liver disease severity. Decompensated cirrhosis and a history of cholangitis were associated with reduced HRQOL in various domains, whereas older age was protective against emotional distress (<jats:italic>p<\/jats:italic>\u2009=\u20090.01). IBD bowel symptoms and emotional impact had a positive correlation with PSC symptoms and emotional impact within the same patient.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>This is the first Australian study describing PSC and IBD PRO in a well\u2010characterised prospective cohort. We have demonstrated that PSC\u2010related PRO is significantly associated with liver disease severity. Further large\u2010scale studies are required to further interrogate these findings.<\/jats:p><\/jats:sec>","DOI":"10.1111\/apt.70054","type":"journal-article","created":{"date-parts":[[2025,3,11]],"date-time":"2025-03-11T15:17:10Z","timestamp":1741706230000},"page":"1612-1621","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Patient Reported Outcomes in Primary Sclerosing Cholangitis: An Australian Perspective"],"prefix":"10.1111","volume":"61","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0967-3282","authenticated-orcid":false,"given":"Natassia","family":"Tan","sequence":"first","affiliation":[{"name":"Department of Gastroenterology and Hepatology The Alfred  Melbourne Australia"},{"name":"School of Translational Medicine Monash University  Melbourne Australia"},{"name":"Department of Gastroenterology and Hepatology Eastern Health  Melbourne 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