Sub-optimale Behandlung von Patienten mit Primär Biliärer Cholangitis (PBC) im klinischen Alltag der deutschen PBC Kohorte Sub-optimal therapy of patients with primary biliary cholangitis (PBC) in the real-life stetting of the German PBC cohort

Wiegand J, Franke A, Müller T, Stein K, Bantel H, Günther R, Denk G, Reuken PA, Schattenberg JM, Naumann U, Böttler T, Weber A, Zeuzem S, Hinz M, Greinert R, Berg C, Wissniowski TT, Simon KG, Trebicka J, Behrens R, Grümmer H, Hofmann WP, Dikopoulos N, Sarrazin C, Roeb E, Kremer A, Muche M, Ringelhan M, Teufel A, Michl P, Keitel V, Marquardt JU, Kautz A, Tacke F, Piotrowski K, Köppe-Bauernfeind N, Trautwein C, Berg T (2024)

Publication Type: Journal article

Publication year: 2024

Journal

Book Volume: 62

Pages Range: 1931-1942

Journal Issue: 11

DOI: 10.1055/a-2382-7720

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.

Authors with CRIS profile

Involved external institutions

Charité - Universitätsmedizin Berlin Germany (DE) Universität Leipzig Germany (DE) Medizinische Hochschule Hannover (MHH) / Hannover Medical School Germany (DE) Universitätsklinikum Schleswig-Holstein (UKSH) Germany (DE) Universitätsklinikum Freiburg Germany (DE) Klinikum der Universität München Germany (DE) Universitätsklinikum Jena Germany (DE) Universitätsmedizin der Johannes Gutenberg-Universität Mainz Germany (DE) Eberhard Karls Universität Tübingen Germany (DE) Universitätsklinikum Frankfurt am Main (KGU) Germany (DE) Universitätsklinikum Halle (Saale) Germany (DE) St. Josefs-Hospital Wiesbaden Germany (DE) Klinikum Chemnitz Germany (DE) Westfälische Wilhelms-Universität (WWU) Münster Germany (DE) Universitätsklinikum Mannheim Germany (DE) Justus-Liebig-Universität Gießen Germany (DE) Universitätsklinikum Heidelberg Germany (DE) Universitätsklinikum Magdeburg A.ö.R. Germany (DE) Klinikum rechts der Isar Germany (DE) Technische Universität Dortmund Germany (DE)

How to cite

APA:

Wiegand, J., Franke, A., Müller, T., Stein, K., Bantel, H., Günther, R.,... Berg, T. (2024). Sub-optimale Behandlung von Patienten mit Primär Biliärer Cholangitis (PBC) im klinischen Alltag der deutschen PBC Kohorte Sub-optimal therapy of patients with primary biliary cholangitis (PBC) in the real-life stetting of the German PBC cohort. Zeitschrift für Gastroenterologie, 62(11), 1931-1942. https://doi.org/10.1055/a-2382-7720

MLA:

Wiegand, Johannes, et al. "Sub-optimale Behandlung von Patienten mit Primär Biliärer Cholangitis (PBC) im klinischen Alltag der deutschen PBC Kohorte Sub-optimal therapy of patients with primary biliary cholangitis (PBC) in the real-life stetting of the German PBC cohort." Zeitschrift für Gastroenterologie 62.11 (2024): 1931-1942.

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