ArticleHepatology communications2026
Burden of primary sclerosing cholangitis in Sweden (2002-2020): Incidence, outcomes, healthcare utilization, and costs.
Article in Hepatology communications, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- Five critical blind spots limiting translational progress in primary sclerosing cholangitis.Hepatology communications · 2026Article
- Mortality trends and demographic-geographic disparities of autoimmune liver diseases among U.S. adults aged ≥45 years, 1999-2023.Frontiers in immunology · 2026Article
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Authors and funding
7 authors.
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Abstract
backgroundThere is limited real-world evidence on the economic burden associated with primary sclerosing cholangitis (PSC). This study evaluated the prevalence, incidence, baseline characteristics, long-term outcomes, healthcare resource use (HRU), and healthcare costs associated with PSC in Sweden.
methodsAdults with PSC were identified in the Swedish National Patient Register from 2002 to 2020 using International Classification of Diseases, 10th revision codes for PSC (K83.0A) and/or cholangitis (K83.0) + inflammatory bowel disease (IBD) (K50/K51). The index date was defined as the date of the first (incident) PSC diagnosis. Patients were required to have a look-back period of ≥360 days (baseline) and a follow-up period of ≥30 days. Annualized mean HRU and healthcare costs (in 2021 euros) were calculated at baseline and during follow-up.
resultsOverall, 4213 incident patients with PSC were included (mean age 48.4 y; 56.8% male; 73.0% with IBD). At baseline, few patients had cirrhosis (4.2%), hepatobiliary or pancreatic cancers (4.6%), or had undergone liver transplantation (1.0%). Median duration of follow-up was 5.7 years. Outpatient visits, number of hospitalizations and filled prescriptions, and length of inpatient stay significantly increased from baseline to end of follow-up, with a 117% increase in annualized mean total healthcare costs from €9442 to €20,487 (p<0.0001), with hospitalization being a primary driver. In total, 935 patients (22.2%) died. The 10-year risk of any complication (any malignancy, cirrhosis, or liver transplantation) was 25.9% (95% CI 24.0-27.9).
conclusionsHRU and healthcare costs for patients with PSC in Sweden were substantial and significantly increased after diagnosis. Effective therapies are needed to reduce disease progression and economic burden.
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