Observational studyAlimentary pharmacology & therapeutics2025
Patient Reported Outcomes in Primary Sclerosing Cholangitis: An Australian Perspective.
Observational study in Alimentary pharmacology & therapeutics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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The trial behind it
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Who cites it
2 citing papers in PubMed.
- Quality of Life in Patients With Primary Sclerosing Cholangitis.Gastro hep advances · 2026Article
- From Isolation to Information: Launching an Online Community for Patients with Primary Sclerosing Cholangitis, Primary Biliary Cholangitis, and Autoimmune Hepatitis in Romania-A Descriptive Study.Healthcare (Basel, Switzerland) · 2025Article
Corrections and comments
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Authors and funding
16 authors.
Funding
Abstract
BACKGROUND AND
aimsPrimary sclerosing cholangitis (PSC) is a rare, cholestatic liver condition that has a significant association with inflammatory bowel disease (IBD) and impaired health-related quality of life (HRQOL). We aimed to characterise and compare validated PSC and IBD patient-reported outcomes (PRO) and determine if PRO correlated with the severity of liver disease.
methodsWe 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.
resultsA total of 55 PSC patients were included. Most patients were male (32/55, 58%) with a median age of 44 years and a median 7 years of follow-up 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 (p = 0.01). IBD bowel symptoms and emotional impact had a positive correlation with PSC symptoms and emotional impact within the same patient.
conclusionThis is the first Australian study describing PSC and IBD PRO in a well-characterised prospective cohort. We have demonstrated that PSC-related PRO is significantly associated with liver disease severity. Further large-scale studies are required to further interrogate these findings.
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