Impact of Pruritus on Quality of Life and Current Treatment Patterns in Patients with Primary Biliary Cholangitis

Dig Dis Sci. 2023 Mar;68(3):995-1005. doi: 10.1007/s10620-022-07581-x. Epub 2022 Jun 15.


Background and aims: Patients with primary biliary cholangitis (PBC) often suffer with pruritus. We describe the impact of pruritus on quality of life and how it is managed in a real-world cohort.

Methods: TARGET-PBC is a longitudinal observational cohort of patients with PBC across the USA. Data include information from medical records for three years prior to the date of consent up to 5 years of follow-up. Enrolled patients were asked to complete patient-reported outcome surveys: PBC-40, 5-D itch, and the PROMIS fatigue survey. Kruskal-Wallis tests were used to compare differences in symptoms between groups.

Results: A total of 211 patients with completed PRO surveys were included in the current study. PRO respondents were compared with non-respondents in the TARGET-PBC population and were broadly similar. Pruritus was reported in 170 patients (81%), with those reporting clinically significant pruritus (30%) scoring worse across each domain of the PBC-40 and 5-D itch, more frequently having cirrhosis, and having significantly greater levels of fatigue. Patients reporting clinically significant pruritus were more likely to receive treatment, but 33% had never received treatment (no itch = 43.9%, mild itch = 38.3%).

Conclusions: The prevalence of pruritus was high in this population, and those reporting clinically significant pruritus had a higher likelihood of having advanced disease and worse quality of life. However, this study found that pruritus in PBC is under-treated. This may be due in part to ineffectiveness of current treatments, poor tolerance, or the lack of FDA-approved medications for pruritus.

Keywords: Primary Biliary Cholangitis; Pruritus; Real-world evidence; Treatment.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Fatigue / epidemiology
  • Fatigue / etiology
  • Humans
  • Liver Cirrhosis
  • Liver Cirrhosis, Biliary* / complications
  • Liver Cirrhosis, Biliary* / diagnosis
  • Liver Cirrhosis, Biliary* / drug therapy
  • Pruritus / diagnosis
  • Pruritus / drug therapy
  • Pruritus / epidemiology
  • Quality of Life