Primary biliary cholangitis (PBC) is primarily studied in academic settings; researchers sought to understand where PBC care most often occurs during a patient’s journey. The study, presented at the AASLD Liver Meeting, found that almost 75% of patients with PBC were managed in general hospitals throughout their follow-up care. However, the following patients were more likely to be referred to academic centers:
- Younger patients;
- Those with cirrhosis; and
- Those with high alanine aminotransferase (ALT) or unfavorable cholestasis parameters after 1 year of treatment with ursodeoxycholic acid (UDCA).
Researchers usedthe retrospective Dutch PBC Cohort Study, which includes all identifiable patients with PBC in the Netherlands from 71 Dutch hospitals between 1990 and 2022 (the latest data collection). The study team collected data on the center of diagnosis, referral to an academic center, date of referral, and center at the end of follow-up.
Of the 4,230 patients included, 83.5% (n=3,532) were diagnosed with PBC in a general hospital.In addition, 74.4% (n=3,146) of patients had all follow-up care (median, 7.4 years) in a general hospital setting.
During follow-up, 386 patients were referred to an academic center, 233 (60.4%) of whom were referred to a liver transplant center. Among those referred, 56% (n=216) remained in academic care for follow-up care. The median age of patients being referred was 54.5 years, 88.3% were female, and the median time from diagnosis to referral was 2.9 years.
At the time of referral, the median alkaline phosphatase was two times the upper limit of normal; 92 (23.8%) patients had cirrhosis, 62% (n=57) of whom had at least one decompensation event.
Adjusted for calendar time, the following characteristics were associated with time to academic referral:
- Age (hazard ratio [HR], 0.96; P<.001);
- Cirrhosis at diagnosis (HR, 4.1);
- ALT level (HR, 1.16; P<.001); and
- Incomplete response after 1 year of UDCA (HR, 3.3; P<.001).
“Future PBC research should also focus on patients in general hospitals to better understand the real-world clinical course of PBC,” the researchers concluded.
Reference
Werner E, van Hooff MCB, van de Vrie MA, et al. A disbalanced minority of patients with primary biliary cholangitis is managed in an academic health care setting. Abstract 4309. Presented at the 2024 American Association for the Study of Liver Diseases’ 75th Liver Meeting; November. 15–19, 2024; San Diego.



