Researchers assessed several autoimmune liver diseases (AILDs) and found that primary biliary cholangitis (PBC) most profoundly impacted patients’ daily lives. The study was presented at the AASLD Liver Meeting.
The 8-year, single-cohort study used data prospectively collected from the Chronic Liver Disease Questionnaire (CLDQ) and EuroQol-5 Dimension 5 Level(EQ-5D-5L) between January 2017 and May 2024. The CLDQ assessed abdominal symptoms, fatigue, systemic symptoms, activity, emotional function, and worry.
A total of 466 patients were included: 230 had autoimmune hepatitis (AIH), 118 had primary sclerosing cholangitis (PSC), and 118 had PBC. The study did not include patients if they had a prior transplant, acute liver failure, or life expectancy less than 6 months.
Alanine aminotransferase and aspartate aminotransferase were highest in patients with AIH (median, 70.3 and 59.0, respectively), while alkaline phosphatase was highest in the PBC cohort (median, 165.5). AIH patients had significantly more cases of cirrhosis (26%) than the other AILD cohorts.
Total CLDQ and EQ-5D-5L index scores were lower in the PBC cohort (5.25 and 0.85, respectively) compared with the AIH (5.54 and 0.88) and PSC (5.59 and 0.88) groups (P<.001 for both).
In patients with PBC, every CLDQ domain was significantly worse except worry; fatigue scored the lowest of the CLDQ domains of PBC, with tiredness (3.91), decreased energy (4.20), and daytime sleepiness (4.27) noted as the worst symptoms. These scores were significantly lower than those reported in the AIH and PSC groups (P<.001).
With the EQ-5D-5L, every item was significantly worse in the PBC cohort except for anxiety/depression; pain was the overall worst in the PBC cohort (mean, 1.45; P<.001). Patients with PSC had the best activity outcomes (5.61) in CLDQ and the best self-care scores (1.01) in EQ-5D-5L. Patients with AIH had fewer abdominal symptoms (5.90) in CLDQ and lower pain scores (1.34) in EQ-5D-5L.
The study was limited by its inability to validate the questionnaire outcomes, potential recall bias, and no evaluation of polypharmacy and sleep apnea.
“Clinicians should prioritize PBC management, using more frequent follow-ups or a structured approach like the TRACE algorithm,” the researchers concluded. “We encourage translational research to better understand PBC pathophysiology and design new treatment plans.”
Reference
Sierra L, Marenco-Flores A, Barba R, et al. Primary biliary cholangitis has the worst quality of life when compared to autoimmune hepatitis and primary sclerosing cholangitis. Abstract 4357. Presented at the 2024 American Association for the Study of Liver Diseases’ 75th Liver Meeting; November. 15–19, 2024; San Diego.



