Sub-optimal therapy of patients with primary biliary cholangitis (PBC) in the real-life stetting of the German PBC cohort

Real-world data on the management of patients with primary biliary cholangitis (PBC) are so far scarce in Germany. Therefore, we aimed to establish a nationwide registry and describe the clinical characteristics and therapy of PBC patients.Three different cohorts defined as ursodeoxycholic acid (UDCA) responders, as inadequate responders according to Paris II criteria, and as newly diagnosed patients were prospectively recruited.This manuscript includes the baseline data of the project.In total, 33/77 (43%) contacted centres (58% of university hospitals, 38% of non-university hospitals, and 24% of private practices) recruited 515 patients including 204 UDCA responders, 221 inadequate responders to UDCA, and 90 newly diagnosed patients.All patients were treated with UDCA; however, a UDCA dosage below the recommended dosage of 13 mg/kg/d was observed in 38.5% of individuals after 12 months of treatment. UDCA dosages were lower in nonacademic compared to academic centres.Only 75/219 (38.5%) of inadequate responders to UDCA received a second-line therapy with obeticholic acid (OCA) and/or bezafibrate (BZF). OCA (13% vs. 4.5%) and BZF (14% vs. 6.5%) were significantly more often prescribed by academic vs. nonacademic centres.Pruritus (27% vs. 15.5%), fatigue (23% vs. 4.5%), and sicca syndrome (14% vs. 1%) were significantly more often reported by academic centres.The German PBC registry could be established, which indicates suboptimal therapy in a relevant proportion of patients and shows significant differences between academic and nonacademic centres. Results are fundamental to improving clinical management at different levels of care.

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Publication Details

Journal
Zeitschrift für Gastroenterologie
Published
2024-09-03
DOI
https://doi.org/10.1055/a-2382-7720
Citations
6
Primary Topic
Liver Diseases and Immunity
Type
article
Field-Weighted Citation Impact
2.22
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article

Sub-optimal therapy of patients with primary biliary cholangitis (PBC) in the real-life stetting of the German PBC cohort

Nektarios Dikopoulos, Christian Trautwein, Rüdiger Behrens, Achim Kautz et al.
6 citations
Zeitschrift für Gastroenterologie
Liver Diseases and Immunity
2.22
article

Sub-optimal therapy of patients with primary biliary cholangitis (PBC) in the real-life stetting of the German PBC cohort

Nektarios Dikopoulos, Christian Trautwein, Rüdiger Behrens, Achim Kautz, Matthias Hinz, Nicole Köppe‐Bauernfeind, Heike Bantel, Patrick Michl, Marion Muche, Jonel Trebicka, Uwe Naumann, Verena Keitel, Harald Grümmer, Philipp A. Reuken, Marc Ringelhan, Annegret Franke, Gerald Denk, Karl‐Georg Simon, Wolf Peter Hofmann, Thaddäus Till Wissniowski, Christoph Sarrazin, Johannes Wiegand, Andreas Emanuel Kremer, Thomas Berg, Christoph P. Berg, Frank Tacke, Jörn M. Schattenberg, Robin Greinert, Jens U. Marquardt, Rainer Günther, Stefan Zeuzem, Andreas Teufel, Andreas Weber, Tobias Müller, Kerstin Stein, Elke Roeb, Tobias Böttler, Katja Piotrowski
article en
6 citations

Abstract

Real-world data on the management of patients with primary biliary cholangitis (PBC) are so far scarce in Germany. Therefore, we aimed to establish a nationwide registry and describe the clinical characteristics and therapy of PBC patients.Three different cohorts defined as ursodeoxycholic acid (UDCA) responders, as inadequate responders according to Paris II criteria, and as newly diagnosed patients were prospectively recruited.This manuscript includes the baseline data of the project.In total, 33/77 (43%) contacted centres (58% of university hospitals, 38% of non-university hospitals, and 24% of private practices) recruited 515 patients including 204 UDCA responders, 221 inadequate responders to UDCA, and 90 newly diagnosed patients.All patients were treated with UDCA; however, a UDCA dosage below the recommended dosage of 13 mg/kg/d was observed in 38.5% of individuals after 12 months of treatment. UDCA dosages were lower in nonacademic compared to academic centres.Only 75/219 (38.5%) of inadequate responders to UDCA received a second-line therapy with obeticholic acid (OCA) and/or bezafibrate (BZF). OCA (13% vs. 4.5%) and BZF (14% vs. 6.5%) were significantly more often prescribed by academic vs. nonacademic centres.Pruritus (27% vs. 15.5%), fatigue (23% vs. 4.5%), and sicca syndrome (14% vs. 1%) were significantly more often reported by academic centres.The German PBC registry could be established, which indicates suboptimal therapy in a relevant proportion of patients and shows significant differences between academic and nonacademic centres. Results are fundamental to improving clinical management at different levels of care.

Zeitschrift für GastroenterologieVol. 62(11)
Goethe University Frankfurt (DE), Friedrich-Alexander-Universität Erlangen-Nürnberg (DE), Johannes Gutenberg University Mainz (DE), TU Dortmund University (DE), Justus-Liebig-Universität Gießen (DE), Heidelberg University (DE), University of Münster (DE), University Medical Center Freiburg (DE), University Hospital Heidelberg (DE), TUM Klinikum (DE), LMU Klinikum (DE), Medizinische Hochschule Hannover (DE), Humboldt-Universität zu Berlin (DE), Universitätsklinikum Erlangen (DE), University Medical Center of the Johannes Gutenberg University Mainz (DE), Nuremberg Hospital (DE), University Hospital of Zurich (CH), St. Josefs Hospital (DE), University Hospital Schleswig-Holstein (DE), University Hospital Frankfurt (DE), Jena University Hospital (DE), University Hospital Magdeburg (DE), St. Josef-Hospital (DE), University Hospital in Halle (DE), Klinikum Leverkusen (DE), University Medical Centre Mannheim (DE), Klinikum Chemnitz (DE), Leibniz Research Centre for Working Environment and Human Factors (DE), Freie Universität Berlin (DE), Charité - Universitätsmedizin Berlin (DE), University of Tübingen (DE), Ludwig-Maximilians-Universität München (DE), Leipzig University (DE), University of Lübeck (DE), Otto-von-Guericke-Universität Magdeburg (DE)
Partnerships for the goals
Openalex Percentile: Top 12%
Liver Diseases and Immunity
2.22
DOISourceOpenAlex
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