Symptom Burden and Treatment Response in Patients with Primary Biliary Cholangitis (PBC)
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ORIGINAL ARTICLE
Symptom Burden and Treatment Response in Patients with Primary Biliary Cholangitis (PBC) Leonard Kaps1,2 · Annette Grambihler1,2 · Bethlehem Yemane2 · Michael Nagel1,2 · Christian Labenz1,2 · Pascal Ploch1,2 · Maurice Michel1,2 · Peter R. Galle1 · Marcus‑Alexander Wörns1 · Jörn M. Schattenberg1,2 Received: 17 October 2019 / Accepted: 10 December 2019 © Springer Science+Business Media, LLC, part of Springer Nature 2019
Abstract Background Primary biliary cholangitis (PBC) is a chronic, cholestatic liver disease that can lead to end-stage liver disease and impairs the quality of life. At current, most data come from few large cohorts. Aim This cross-sectional study evaluated treatment response and symptom burden in patients with PBC in Germany to expand the available data. Methods A total of 140 PBC patients were prospectively enrolled at the outpatient liver clinic of the University Medical Center in Mainz starting in June 2016. Historic and current response rates of UDCA treatment were determined using published binary models. Symptom burden was assessed using the PBC-40 questionnaire. Results The primary treatment response ranged between 73 and 86% depending on the definition used. Importantly, this response rate was maintained over a median time of 5 years in follow-up. The highest symptom burden was observed for fatigue and emotional (2.4 ± 1; 2.3 ± 1.1 of 5), while pruritus (1.1 ± 1.1 of 5) had the lowest scores. IgG correlated with the PBC-40 domain social (r = 0.211, p = 0.032), while HDL inversely correlated with the symptom burden of pruritus (r = − 0.236; p = 0.018). Conclusion In this tertiary care cohort, 75% of the patients showed biochemical response after 1 year according to the acknowledged Paris II criteria. Patients reported a significant symptom burden, and the domain fatigue of the PBC-40 was most prominently impaired. Keywords PBC · UDCA · PBC-40 · Pruritus · Symptom burden · Treatment response Abbreviations AIH Autoimmune hepatitis ALT Alanine transaminase ALP Alkaline phosphatase AST Aspartate transaminase gGT Gamma-glutamyltransferase HDL High-density lipoprotein Electronic supplementary material The online version of this article (https://doi.org/10.1007/s10620-019-06009-3) contains supplementary material, which is available to authorized users. * Jörn M. Schattenberg joern.schattenberg@unimedizin‑mainz.de 1
I. Department of Medicine, University Medical Center of the Johannes Gutenberg-University, Langenbeckstrasse 1, 55131 Mainz, Germany
Metabolic Liver Research Program, University Medical Center of the Johannes Gutenberg-University, Mainz, Germany
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HDL-C HDL cholesterol IgG Immunoglobulin G IgM Immunoglobulin M IQR Interquartile range LDL Low-density lipoprotein LDL-C LDL cholesterol LSM Liver stiffness measure OCA Obeticholic acid PBC Primary biliary cholangitis TC Total cholesterol QoL Quality of life UDCA Ursodeoxycholic acid ULN Upper limit normal
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Introduction Primary biliary cholangitis (PBC) is a c
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