Hidden obstacles such as a lack of follow-up care, financial barriers and lack of referrals to specialists appear to have a negative influence on primary biliary cholangitis (PBC) diagnosis, thus leading to delayed treatment, according to a recently published study in Cureus.
Research shows that Ursodeoxycholic acid (UDCA) can slow PBC progression, reducing the need for liver transplantation. Therefore, early diagnosis is of the utmost importance for patients with PBC.
The study authors stated that early diagnosis and treatment is more common in some groups of patients than others.
“The United States-based Fibrotic Liver Disease (FOLD) Consortium previously found that men were less likely to receive UDCA than women and that Black patients were less likely to receive treatment than White patients, even though Black patients benefit significantly more from UDCA,” the authors wrote.
Because of the observed disparities in care, the authors aimed to analyze the root causes for deficient PBC care.
Researchers used data gathered by FOLD between 2006 and 2016, including over 400 patients who met the inclusion criteria. Of those, approximately 7% of patients were not appropriately treated. Of this group, seven refused treatment, and six were never offered therapy by their provider.
The six patients who never received therapy were either asymptomatic at the moment of diagnosis or had very mild symptoms. However, two of the diagnosed and treated patients had severe decompensation at the moment of diagnosis.
Three of the untreated patients had other severe health problems, such as cancer, that acted as a barrier to UDCA treatment. Furthermore, lack of access to treatment due to insurance issues was a common concern.
The authors remarked that 18 undiagnosed patients never received a referral to a specialist (hepatologist/gastroenterologist). This highlights the need for more awareness of PBC among primary care physicians.
“Multiple factors influencing the lack of evaluation and treatment in PBC patients were identified at the provider and patient levels,” the authors wrote. “The most common reasons included financial barriers, loss to follow-up, severe decompensated disease at diagnosis, and lack of referral to specialists for further evaluation,”.
