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

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.