Pruritus in primary biliary cholangitis: insights from the German PBC registry across secondary and tertiary care

Toni Herta¹, Annegret Franke², Tobias Müller³, Kerstin Stein⁴, Heike Bantel⁵, Rainer Günther⁶, Gerald Denk⁷, Philipp A Reuken⁸, Jörn M Schattenberg⁹, Uwe Naumann¹⁰, Tobias Böttler¹¹, Andreas Weber¹², Stefan Zeuzem¹³, Matthias Hinz¹⁴, Robin Greinert¹⁵, Christoph Berg¹⁶, Thaddäus Till Wissniowski¹⁷, Karl-Georg Simon¹⁸, Jonel Trebicka¹⁹, Rüdiger Behrens²⁰, Harald Grümmer²¹, Wolf Peter Hofmann²², Nektarios Dikopoulos²³, Christoph Sarrazin²⁴, Elke Roeb²⁵, Marion Muche²⁶, Marc Ringelhan²⁷, Andreas Teufel²⁸, Uta Merle²⁹, Verena Keitel³⁰, Jens U Marquardt³¹, Achim Kautz³², Frank Tacke³³, Katja Piotrowski², Nicole Köppe-Bauernfeind², Christian Trautwein³⁴, Thomas Berg³⁵, Johannes Wiegand³⁵, Andreas E Kremer³⁶

Affiliations

¹ Division of Hepatology, Department of Medicine II, Leipzig University Medical Center, Leipzig, Germany; Department of Hepatology and Gastroenterology, Campus Virchow-Klinikum and Campus Charité Mitte, Charité-Universitätsmedizin Berlin, Berlin, Germany; Berlin Institute of Health at Charité - Universitätsmedizin Berlin, BIH Biomedical Innovation Academy, BIH Charité Clinician Scientist Program, Berlin, Germany; Department of Gastroenterology and Hepatology, Tytgat Institute for Liver and Intestinal Research, AGEM, Amsterdam University Medical Centers, Amsterdam, the Netherlands.
² Clinical Trial Center of Medical Faculty, University of Leipzig, Leipzig, Germany.
³ Department of Hepatology and Gastroenterology, Campus Virchow-Klinikum and Campus Charité Mitte, Charité-Universitätsmedizin Berlin, Berlin, Germany; Klinik für Innere Medizin - Gastroenterologie, Hepatologie, Diabetologie, Angiologie und Abhängigkeitserkrankungen Mitte, DRK Kliniken Berlin Mitte, Berlin, Germany.
⁴ Private Practice for Hepatology, Magdeburg, Germany.
⁵ Department of Gastroenterology, Hepatology, Infectious Diseases and Endocrinology, Hannover Medical School, Hannover, Germany.
⁶ Division of Hepatology, Department of Medicine I, Universitätsklinikum Schleswig-Holstein, Kiel, Germany.
⁷ Department of Medicine II and Transplantation Center, University Hospital, LMU Munich, Munich, Germany.
⁸ Jena University Hospital, Department of Internal Medicine IV, Gastroenterology, Hepatology, Infectious diseases, Jena, Germany.
⁹ I. Department of Internal Medicine, University Medical Center of the Johannes Gutenberg University, Mainz, Germany; Department of Medicine II, Saarland University Medical Center, Homburg, Germany.
¹⁰ UBN Private Practice Berlin, Berlin, Germany.
¹¹ Department of Medicine II, University Hospital Freiburg, Freiburg, Germany.
¹² Department of Internal Medicine VI Gastroenterology, Hepatology, Endocrinology Hospital Nürnberg, Nürnberg, Germany.
¹³ Goethe University, University Hospital, Department of Medicine, Frankfurt, Germany.
¹⁴ Private Practice for Gastroenterology Herne, Herne, Germany.
¹⁵ Department of Gastroenterology, University Hospital Halle, Halle, Germany.
¹⁶ Department of Internal Medicine I, University of Tübingen, Tübingen, Germany.
¹⁷ Zentrum Innere Medizin II, Klinikum Chemnitz GmbH, Chemnitz, Germany.
¹⁸ Practice for Gastroenterology, Leverkusen, Germany.
¹⁹ Department of Internal Medicine B, University of Münster, Münster, Germany.
²⁰ Private Practice for Gastroenterology, Halle, Germany.
²¹ Private Practice of Internal Medicine/Gastroenterology, Potsdam, Germany.
²² Private Practice for Gastroenterology at Bayerischer Platz, Berlin, Germany.
²³ Private Practice for Gastroenterology & Internal Medicine Ludwig & Dikopoulos, Dornstadt, Germany.
²⁴ Medizinische Klinik II, St. Josefs-Hospital, Wiesbaden, Germany.
²⁵ Department of Gastroenterology, Justus Liebig University Giessen, Giessen, Germany.
²⁶ Department of Gastroenterology, Infectious Diseases, and Rheumatology, Campus Benjamin Franklin, Charité-Universitätsmedizin Berlin, Berlin, Germany.
²⁷ Department of Internal Medicine II, Klinikum rechts der Isar, Technische Universität München, Munich, Germany.
²⁸ Department of Medicine II, Division of Hepatology, Medical Faculty Mannheim, Heidelberg University, Mannheim, Germany.
²⁹ Department of Internal Medicine IV, University Hospital of Heidelberg, Heidelberg, Germany.
³⁰ Department of Gastroenterology, Hepatology and Infectious Diseases, Faculty of Medicine, Otto Von Guericke University Magdeburg, Magdeburg, Germany.
³¹ First Department of Medicine, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany.
³² KautzHoch5, Köln, Germany.
³³ Department of Hepatology and Gastroenterology, Campus Virchow-Klinikum and Campus Charité Mitte, Charité-Universitätsmedizin Berlin, Berlin, Germany.
³⁴ Leibniz-Institut für Arbeitsforschung an der TU Dortmund, Dortmund, Germany.
³⁵ Division of Hepatology, Department of Medicine II, Leipzig University Medical Center, Leipzig, Germany.
³⁶ Department of Gastroenterology and Hepatology, University Hospital Zürich, Zürich, Switzerland. Electronic address: andreas.kremer@usz.ch.

PMID: 41083068
DOI: 10.1016/j.aohep.2025.102140

Free article

Case Reports

Pruritus in primary biliary cholangitis: insights from the German PBC registry across secondary and tertiary care

Toni Herta et al. Ann Hepatol. 2025.

Free article

. 2025 Oct 11;31(1):102140.

doi: 10.1016/j.aohep.2025.102140. Online ahead of print.

Authors

Affiliations

¹ Division of Hepatology, Department of Medicine II, Leipzig University Medical Center, Leipzig, Germany; Department of Hepatology and Gastroenterology, Campus Virchow-Klinikum and Campus Charité Mitte, Charité-Universitätsmedizin Berlin, Berlin, Germany; Berlin Institute of Health at Charité - Universitätsmedizin Berlin, BIH Biomedical Innovation Academy, BIH Charité Clinician Scientist Program, Berlin, Germany; Department of Gastroenterology and Hepatology, Tytgat Institute for Liver and Intestinal Research, AGEM, Amsterdam University Medical Centers, Amsterdam, the Netherlands.
² Clinical Trial Center of Medical Faculty, University of Leipzig, Leipzig, Germany.
³ Department of Hepatology and Gastroenterology, Campus Virchow-Klinikum and Campus Charité Mitte, Charité-Universitätsmedizin Berlin, Berlin, Germany; Klinik für Innere Medizin - Gastroenterologie, Hepatologie, Diabetologie, Angiologie und Abhängigkeitserkrankungen Mitte, DRK Kliniken Berlin Mitte, Berlin, Germany.
⁴ Private Practice for Hepatology, Magdeburg, Germany.
⁵ Department of Gastroenterology, Hepatology, Infectious Diseases and Endocrinology, Hannover Medical School, Hannover, Germany.
⁶ Division of Hepatology, Department of Medicine I, Universitätsklinikum Schleswig-Holstein, Kiel, Germany.
⁷ Department of Medicine II and Transplantation Center, University Hospital, LMU Munich, Munich, Germany.
⁸ Jena University Hospital, Department of Internal Medicine IV, Gastroenterology, Hepatology, Infectious diseases, Jena, Germany.
⁹ I. Department of Internal Medicine, University Medical Center of the Johannes Gutenberg University, Mainz, Germany; Department of Medicine II, Saarland University Medical Center, Homburg, Germany.
¹⁰ UBN Private Practice Berlin, Berlin, Germany.
¹¹ Department of Medicine II, University Hospital Freiburg, Freiburg, Germany.
¹² Department of Internal Medicine VI Gastroenterology, Hepatology, Endocrinology Hospital Nürnberg, Nürnberg, Germany.
¹³ Goethe University, University Hospital, Department of Medicine, Frankfurt, Germany.
¹⁴ Private Practice for Gastroenterology Herne, Herne, Germany.
¹⁵ Department of Gastroenterology, University Hospital Halle, Halle, Germany.
¹⁶ Department of Internal Medicine I, University of Tübingen, Tübingen, Germany.
¹⁷ Zentrum Innere Medizin II, Klinikum Chemnitz GmbH, Chemnitz, Germany.
¹⁸ Practice for Gastroenterology, Leverkusen, Germany.
¹⁹ Department of Internal Medicine B, University of Münster, Münster, Germany.
²⁰ Private Practice for Gastroenterology, Halle, Germany.
²¹ Private Practice of Internal Medicine/Gastroenterology, Potsdam, Germany.
²² Private Practice for Gastroenterology at Bayerischer Platz, Berlin, Germany.
²³ Private Practice for Gastroenterology & Internal Medicine Ludwig & Dikopoulos, Dornstadt, Germany.
²⁴ Medizinische Klinik II, St. Josefs-Hospital, Wiesbaden, Germany.
²⁵ Department of Gastroenterology, Justus Liebig University Giessen, Giessen, Germany.
²⁶ Department of Gastroenterology, Infectious Diseases, and Rheumatology, Campus Benjamin Franklin, Charité-Universitätsmedizin Berlin, Berlin, Germany.
²⁷ Department of Internal Medicine II, Klinikum rechts der Isar, Technische Universität München, Munich, Germany.
²⁸ Department of Medicine II, Division of Hepatology, Medical Faculty Mannheim, Heidelberg University, Mannheim, Germany.
²⁹ Department of Internal Medicine IV, University Hospital of Heidelberg, Heidelberg, Germany.
³⁰ Department of Gastroenterology, Hepatology and Infectious Diseases, Faculty of Medicine, Otto Von Guericke University Magdeburg, Magdeburg, Germany.
³¹ First Department of Medicine, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany.
³² KautzHoch5, Köln, Germany.
³³ Department of Hepatology and Gastroenterology, Campus Virchow-Klinikum and Campus Charité Mitte, Charité-Universitätsmedizin Berlin, Berlin, Germany.
³⁴ Leibniz-Institut für Arbeitsforschung an der TU Dortmund, Dortmund, Germany.
³⁵ Division of Hepatology, Department of Medicine II, Leipzig University Medical Center, Leipzig, Germany.
³⁶ Department of Gastroenterology and Hepatology, University Hospital Zürich, Zürich, Switzerland. Electronic address: andreas.kremer@usz.ch.

PMID: 41083068
DOI: 10.1016/j.aohep.2025.102140

Abstract

Introduction and objectives: Pruritus is a frequent and burdensome symptom in patients with primary biliary cholangitis (PBC), significantly affecting quality of life. Despite its clinical relevance, data on the prevalence and management, particularly across different levels of healthcare, remain limited. We aimed to assess prevalence, severity, and treatment of pruritus in PBC patients across secondary and tertiary care.

Patients and methods: Within the German PBC registry, the intensity and management of pruritus were assessed cross-sectionally by treating physicians using a standardized 4-point verbal rating scale (absent, mild, moderate, severe), as well as by analyzing prescribed antipruritic medications.

Results: Pruritus was reported in 23 % (n = 120/515) of patients and classified as mild, moderate, or severe in 59 (49 %), 41 (34 %), and 20 (17 %) cases, respectively. The prevalence of pruritus was 27 % (n = 96/360) for tertiary versus 16 % (n = 24/155) for secondary care (p = 0.006). Moderate or severe pruritus was observed in 13.3 % (n = 48/360) of patients at tertiary centers compared to 8.4 % (n = 13/155) at secondary centers (p = 0.137). Antipruritic therapies were used in only 22.5 % (n = 27/120) patients with pruritus, with bezafibrate being the most frequently prescribed medication (63 %, n = 17/27). Patients with pruritus were more likely to receive antipruritic therapies in tertiary than secondary care: 26 % (n = 25/96) vs. 8 % (n = 2/24) (p = 0.098).

Conclusions: Pruritus in patients with PBC is common and under-treated in the real-world scenario. Assessment and management vary by healthcare level, highlighting the need for standardized care and greater awareness of treatment options across all settings.

Keywords: Antipruritic therapy; Bezafibrate; PPAR-agonists; Patient reported outcomes; Quality of life.

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Conflict of interest statement

Declaration of interests JW: Lecturer and advisory board member for Intercept/Advanz Pharma, GSK, Ipsen, Gilead; TH: consulting fees of Albireo (Ipsen), Advanz; advisory board member for Advanz, Gilead, GSK; speaker’s honoraria of Ipsen; authors fee of Falk Foundation; TM: supported by the German Research Foundation Grants MU 2864/1–3 and MU 2864/3–1; KS: Receipt of speaker´s honoraria or advisory board: Gilead, Intercept/Advanz Pharma, Abbvie, Falk, Novo Nordisk, Lilly; HB: Consultant: Intercept/Advance Pharma, Ipsen; GD: Consultant / speaker: AbbVie, Advanz/Intercept, Alexion, Falk Foundation, Gilead, Novartis, Orphalan, Univar; PAR: Consulting and lectures fees: Astra Zeneca, BMS, Boston Scientific, CSL Behring, Gilead, Pfizer, Abbvie, Norgine; JMS: Consultant: Akero, Alentis, Alexion, Altimmune, Astra Zeneca, 89Bio, Bionorica, Boehringer Ingelheim, Gilead Sciences, GSK, HistoIndex, Ipsen, Inventiva Pharma, Madrigal Pharmaceuticals,Kríya Therapeutics, Lilly, MSD Sharp & Dohme GmbH, Nordic Bioscience, Northsea Therapeutics, Novartis, Novo Nordisk, Pfizer, Roche, Sanofi, Siemens Healthineers; Stock Options: Hepta Bio; Speaker Honorarium: Boehringer Ingelheim, Echosens, Novo Nordisk, Madrigal Pharmaceuticals; SZ: Speakers bureau and/or consultancy: Abbvie, BioMarin, Boehringer Ingelheim, Gilead, GSK, Intercept, Ipsen, Janssen, Madrigal, MSD/Merck, NovoNordisk, SoBi, Theratechnologies; KGS: Consultant: Advance Pharma, Speaker Honorarium: AbbVie, Gilead; JT: has received speaking and/or consulting fees from Versantis, Gore, Boehringer-Ingelheim, Falk, Grifols, Genfit and CSL Behring; WPH: Consultant or Speaker Honorarium: Intercept /Advanz, Ipsen, NovoNordisk, Gilead, Abbvie, Norgine; CS: Consultant, Study support or Speaker Honorarium: Calliditas, Falk, Intercept/Advanz, Ipsen, Mirum; ER: Receipt of honoraria or consultation fees/advisory board: Abbvie, Amgen, Intercept, Medac, Merz, Norgine, Falk Foundation, Gilead, Pfizer, Repha, Takeda; AEK: Research grant: Gilead, Intercept. Speakers bureau: Abbvie, Advanz, AOP Orphan, Bayer, BMS, CMS, CymaBay, Falk, Gilead, GSK, Intercept, Ipsen, Newbridge, Novartis, Lilly, Mirum, MSD, Roche, Zambon. Consultant or Speaker Honorarium: Abbvie, Advanz, Alentis, AlphaSigma, AstraZenca, AOP Orphan, Avior, Bayer, BMS, CymaBay, Escient, Falk, Gilead, GSK, Guidepoint, Intercept, Ipsen, Mirum, Medscape, MSD, Newbridge, Novo Nordisk, Roche, Takeda, Vertex Viofor; MR: Consultant, or Speaker Honorarium: Intercept/Advanz, Gilead, Abbvie; AW: speaker honorarium: Abbvie; AT: Speaker Honorarium: Intercept/Advanz; UM: Consultant or Speaker Honorarium: CytoSorbents, Falk, Gilead, Microbiotica, Univar; VK: Consultant Astra Zeneca, Speaker’s Honoraria from AbbVie, Gilead, Falk, Mirum, Albireo/Ipsen, Merck, MedUpdate GmbH, Sanofi, CSL Behring; ER: Receipt of honoraria or consultation fees/advisory board: Abbvie, Amgen, Intercept, Medac, Merz, Norgine, Falk Foundation, Gilead, Pfizer, Repha, Takeda; FT: Research grant: AstraZeneca, MSD, Gilead. Speakers bureau: Gilead, Abbvie, Falk, Merz, Orphalan, Advanz. Consultant: AstraZeneca, Gilead, Abbvie, Alnylam, BMS, Intercept / Advanz, MSD, GSK, Ipsen, Pfizer, Novartis, Novo Nordisk, Sanofi; CT: Receipt of honoraria or consultation fees/advisory board: Intercept/Advanz Pharma; TB: Receipt of grants/research supports: Abbvie, BMS, Gilead, MSD/Merck, Humedics, Intercept, Merz, Norgine, Novartis, Orphalan, Sequana Medical; Receipt of honoraria or consultation fees/advisory board: Abbvie, Alexion, Albireo, Bayer, Gilead, GSK, Eisai, Enyo Pharma, HepaRegeniX GmbH, Humedics, Intercept, Ipsen, Janssen, MSD/Merck, Novartis, Orphalan, Roche, Sequana Medical, SIRTEX, SOBI, and Shionogi; Participation in a company sponsored speaker’s bureau: Abbvie, Advance Pharma, Alexion, Albireo, Bayer, Gilead, Eisai, Falk Foundation, Intercept, Ipsen, Janssen, MedUpdate GmbH, MSD/Merck, Novartis, Orphalan, Sequana Medica, SIRTEX, and SOBI; Nothing to disclose: AF, RG, UN, TB, MH, RG, CB, TTW, RB, HG, ND, MM, JUM, AK, KP, NKB.

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Pruritus in primary biliary cholangitis: insights from the German PBC registry across secondary and tertiary care

Affiliations

Pruritus in primary biliary cholangitis: insights from the German PBC registry across secondary and tertiary care

Authors

Affiliations

Abstract

Conflict of interest statement

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LinkOut - more resources

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