Fatigue in people with primary biliary cholangitis: a position paper from the European Reference Network for Rare Liver Diseases

Affiliations

¹ Department of Gastroenterology and Hepatology, University Hospitals Leuven, Leuven, Belgium; European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
² Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
³ Laboratoire de Psychopathologie et Processus de Santé, Université Paris Cité, Boulogne-Billancourt, France.
⁴ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Department of Hepatology, Transplantology and Internal Medicine, Medical University of Warsaw, Warsaw, Poland; Translational Medicine Group, Pomeranian Medical University, Szczecin, Poland.
⁵ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Department of Gastroenterology and Hepatology, Hvidovre University Hospital Copenhagen, Hvidovre, Denmark; Department of Clinical Medicine, Faculty of Health Sciences, University of Copenhagen, Copenhagen, Denmark.
⁶ NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle, UK.
⁷ The Autoimmune and Rare Liver Disease Programme, Division of Gastroenterology and Hepatology, Toronto General Hospital, University Health Network, Toronto, ON, Canada.
⁸ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Albi Association pour la Lutte Contre les Maladies Inflammatoires du Foie et des Voies Biliaires, Versailles, France.
⁹ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Martin Zeitz Centre for Rare Diseases, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany; Internal Department of Medicine, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.
¹⁰ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Department of Gastroenterology and Hepatology, Erasmus University Medical Centre, Rotterdam, Netherlands.
¹¹ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Centre for Autoimmune Liver Diseases, Division of Gastroenterology, Fondazione IRCCS San Gerardo dei Tintori, ERN-RARE LIVER Center, Monza, Italy; Department of Medicine and Surgery, University of Milano-Bicocca, Monza, Italy.
¹² Department of Gastroenterology and Hepatology, University Hospitals Leuven, Leuven, Belgium; European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Electronic address: jef.verbeek@uzleuven.be.

PMID: 41082897
DOI: 10.1016/S2468-1253(25)00257-2

Review

Fatigue in people with primary biliary cholangitis: a position paper from the European Reference Network for Rare Liver Diseases

Ozgur M Koc et al. Lancet Gastroenterol Hepatol. 2025.

. 2025 Oct 10:S2468-1253(25)00257-2.

doi: 10.1016/S2468-1253(25)00257-2. Online ahead of print.

Authors

Affiliations

¹ Department of Gastroenterology and Hepatology, University Hospitals Leuven, Leuven, Belgium; European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
² Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
³ Laboratoire de Psychopathologie et Processus de Santé, Université Paris Cité, Boulogne-Billancourt, France.
⁴ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Department of Hepatology, Transplantology and Internal Medicine, Medical University of Warsaw, Warsaw, Poland; Translational Medicine Group, Pomeranian Medical University, Szczecin, Poland.
⁵ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Department of Gastroenterology and Hepatology, Hvidovre University Hospital Copenhagen, Hvidovre, Denmark; Department of Clinical Medicine, Faculty of Health Sciences, University of Copenhagen, Copenhagen, Denmark.
⁶ NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle, UK.
⁷ The Autoimmune and Rare Liver Disease Programme, Division of Gastroenterology and Hepatology, Toronto General Hospital, University Health Network, Toronto, ON, Canada.
⁸ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Albi Association pour la Lutte Contre les Maladies Inflammatoires du Foie et des Voies Biliaires, Versailles, France.
⁹ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Martin Zeitz Centre for Rare Diseases, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany; Internal Department of Medicine, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.
¹⁰ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Department of Gastroenterology and Hepatology, Erasmus University Medical Centre, Rotterdam, Netherlands.
¹¹ European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Centre for Autoimmune Liver Diseases, Division of Gastroenterology, Fondazione IRCCS San Gerardo dei Tintori, ERN-RARE LIVER Center, Monza, Italy; Department of Medicine and Surgery, University of Milano-Bicocca, Monza, Italy.
¹² Department of Gastroenterology and Hepatology, University Hospitals Leuven, Leuven, Belgium; European Reference Network for Rare Liver Diseases (ERN RARE-LIVER), University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Electronic address: jef.verbeek@uzleuven.be.

PMID: 41082897
DOI: 10.1016/S2468-1253(25)00257-2

Abstract

Given the unmet need of fatigue in primary biliary cholangitis (PBC), the PBC working group of the European Reference Network for Rare Liver Diseases assessed and summarised the current evidence relating to fatigue in PBC to provide guidance for clinical practice and identify knowledge gaps to shape the future research agenda. Six key questions regarding PBC-related fatigue were summarised through systematic review and meta-analyses. Fatigue is highly prevalent in PBC and substantially affects health-related quality of life. Several measurement tools are available but future research should emphasise longitudinal designs to track symptoms with easy-to-apply and accurate tools. The pathophysiology of fatigue in PBC remains largely unknown and involves a complex interplay of various factors. Pilot studies suggest the effectiveness of non-pharmacological treatments, which warrant further investigation. Pending the results of clinical trials, no pharmacological treatment can be recommended for PBC-related fatigue. Finally, we introduce a practical, three-step ASK-MEASURE-TREAT algorithm that can be applied in all patients with PBC.

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Conflict of interest statement

Declaration of interests OMK received travel grants from Gilead Sciences and his institution received grants from Gilead Sciences, AbbVie, MSD, and Cytuvax. A-KT received research funding (no personal honoraria) from the German Research Foundation and remunerations for a textbook from Ernst Reinhardt Publishing (Germany). PM has received consultancy fees from Ipsen. HY has received consultancy fees from Ipsen. DEJ has received grant funding or fees from GSK, Intercept Pharmaceuticals, Falk, Pfizer, Abbott, and Novartis. GH has received consultancy fees from Ipsen, Gilead, GSK, Falk, Kowa, Mirum, Pliant, Chemomab, Advanz, Intercept, and Kezar. CS has received travel grants and lecture fees from Falk Foundation, and consulting fees from Chemomab, Pliant, Agomab, and Moonlake. FN has received consultancy fees from Gilead, Mirum, Escient, Calliditas, Cymabay, and Intercept. AJvdM has received speakers fees from CymaBay/Gilead, Mirum, Ipsen, AOP Health, and GSK; research grants from CymaBay/Gilead, Intercept, Mirum, and Ipsen; and consultancy fees from CymaBay/Gilead, Intercept, Mirum, Ipsen, and AOP Health. AG has received consultancy fees from Ipsen, Gilead, and Signanthealth. JV has received speaker fees from Gilead and Orphalan; travel fees from Gilead, AbbVie, Janssen, Dr Falk Pharma, Astellas, Ipsen, and Gilead; research grants from Gilead; and consultancy fees from Astra Zeneca, Eisai, Takeda, Astellas, Ipsen, and Gilead. All other authors declare no competing interests.

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Fatigue in people with primary biliary cholangitis: a position paper from the European Reference Network for Rare Liver Diseases

Affiliations

Fatigue in people with primary biliary cholangitis: a position paper from the European Reference Network for Rare Liver Diseases

Authors

Affiliations

Abstract

Conflict of interest statement

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LinkOut - more resources

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