Disease burden in primary sclerosing cholangitis in the Netherlands: A long-term follow-up study.

Autor: van Munster KN; Department of Gastroenterology and Hepatology, Amsterdam University Medical Center, location AMC, Amsterdam Gastroenterology, Endocrinology & Metabolism, Amsterdam, The Netherlands., Mol B; Department of Gastroenterology and Hepatology, Amsterdam University Medical Center, location AMC, Amsterdam Gastroenterology, Endocrinology & Metabolism, Amsterdam, The Netherlands., Goet JC; Department of Gastroenterology and Hepatology, Erasmus MC, University Medical Center, Rotterdam, The Netherlands., van Munster SN; Department of Gastroenterology and Hepatology, Amsterdam University Medical Center, location AMC, Amsterdam Gastroenterology, Endocrinology & Metabolism, Amsterdam, The Netherlands., Weersma RK; Department of Gastroenterology and Hepatology, University of Groningen and University Medical Center Groningen, Groningen, The Netherlands., de Vries AC; Department of Gastroenterology and Hepatology, Erasmus MC, University Medical Center, Rotterdam, The Netherlands., van der Meer AJ; Department of Gastroenterology and Hepatology, Erasmus MC, University Medical Center, Rotterdam, The Netherlands., Inderson A; Department of Gastroenterology and Hepatology, Leiden University Medical Center, Leiden, The Netherlands., Drenth JP; Department of Gastroenterology and Hepatology, Radboud University Medical Center, Nijmegen, The Netherlands., van Erpecum KJ; Department of Gastroenterology and Hepatology, University Medical Center Utrecht, Utrecht, The Netherlands., Boonstra K; Department of Gastroenterology and Hepatology, Amsterdam University Medical Center, location VUmc, Amsterdam Gastroenterology & Metabolism, Amsterdam, The Netherlands., Beuers U; Department of Gastroenterology and Hepatology, Amsterdam University Medical Center, location AMC, Amsterdam Gastroenterology, Endocrinology & Metabolism, Amsterdam, The Netherlands., Dijkgraaf MGW; Department of Epidemiology and Data Science, Amsterdam University Medical Center, location University of Amsterdam, Amsterdam Public Health, Amsterdam, The Netherlands., Ponsioen CY; Department of Gastroenterology and Hepatology, Amsterdam University Medical Center, location AMC, Amsterdam Gastroenterology, Endocrinology & Metabolism, Amsterdam, The Netherlands.
Jazyk: angličtina
Zdroj: Liver international : official journal of the International Association for the Study of the Liver [Liver Int] 2023 Mar; Vol. 43 (3), pp. 639-648. Date of Electronic Publication: 2022 Nov 15.
DOI: 10.1111/liv.15471
Abstrakt: Background & Aims: Primary sclerosing cholangitis (PSC) is a progressive, cholestatic liver disease which greatly impacts the lives of individuals. Burden of disease due to shortened life expectancy and impaired quality of life is ill-described. The aim of this study was to assess long-term disease burden in a large population-based registry with regard to survival, clinical course, quality adjusted life years (QALYs), medical consumption and work productivity loss.
Methods: All PSC patients living in a geographically defined area covering ~50% of the Netherlands were included, together with patients from the three liver transplant centres. Survival was estimated by competing risk analysis. Proportional shortfall of QALYs during disease course was measured relative to a matched reference cohort using validated questionnaires. Work productivity loss and medical consumption were evaluated over time.
Results: A total of 1208 patients were included with a median follow-up of 11.2 year. Median liver transplant-free survival was 21.0 years. Proportional shortfall of QALYs increased to 48% >25 years after diagnosis. Patients had on average 12.4 hospital contact days among which 3.17 admission days per year, annual medical costs were €12 169 and mean work productivity loss was 25%.
Conclusions: Our data quantify for the first time disease burden in terms of QALYs lost, clinical events, medical consumption, costs as well as work productivity loss, and show that all these are substantial and increase over time.
(© 2022 The Authors. Liver International published by John Wiley & Sons Ltd.)
Databáze: MEDLINE
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