Factors associated with lack of PBC evaluation and treatment: A single tertiary care center experience

Document Type

Conference Proceeding

Publication Date


Publication Title

Am J Gastroenterol


Introduction: A previous study by the U.S. based Fibrotic Liver Disease Consortium (FOLD) demonstrated that black and male Primary Biliary Cirrhosis (PBC) patients are less likely to receive PBC therapy than white and female PBC patients. We sought to examine the reasons that FOLD PBC patients never received ursodeoxycholic (UDCA) or obeticholic acid therapy. Methods: FOLD-consortium PBC patients were previously identified and their medical record data from 2006-2016 collected and stored in the FOLD database. For the present study, we conducted indepth manual reviews of the medical records of the PBC patients at one of the 11 participating FOLD sites with no record of PBC therapy. A structured data collection instrument was used to systematically collect reasons that these patients had never initiated treatment. Two reviewers independently reviewed and collected the data for each patient under the supervision of a senior hepatologist. Discrepant results between the two reviewers were discussed and resolved, or failing resolution, were adjudicated by the senior hepatologist. Results: Among 494 patients with PBC (11% male, 71% white/12% black) with a median follow-up of 5.2 years, 38 (7.7%) had never received PBC therapy (16% male, 66% white/24% black). Out of the 38 patients that had never received PBC therapy, 20 (53%) were recognized by providers to have PBC and 18 (47%) were not recognized to have PBC. Of the 20 patients recognized to have PBC, 6/20 were willing to accept treatment. The most common reasons cited for not starting UDCA or obeticholic acid therapy were advanced age, mild symptoms, severe disease/rapid decompensation, liver transplant evaluation, loss of follow-up, and insurance/cost issue. Conclusion: Multiple factors influencing the lack of evaluation and treatment in PBC patients were identified at the provider and patient levels. Predominant provider factors were lack of referral to specialists by primary care providers and specialist knowledge, attitudes and information management leading to inadequate PBC recognition. At the patient level, Important factors included mild asymptomatic disease, severe decompensated disease, competing health concerns, medication cost difficulties, UDCA intolerance due to side effects and lack of appropriate follow up. Future interventions targeting modifiable provider and patient barriers may improve rates and timeliness of PBC diagnosis and treatment.

PubMed ID

Not assigned.





First Page