Nearly half of PBC patients in US haven’t seen a specialist recently
Study finds highest frequency, when adjusted for population size, in rural areas
About 40 in every 100,000 U.S. adults have primary biliary cholangitis (PBC), with its frequency, when adjusted to population size, being highest in some rural areas, a study showed.
In addition, slightly more than half of PBC patients were recently treated by a gastroenterologist specializing in the digestive system or a hepatologist specializing in the liver.
“The pockets of high prevalence of PBC located in some rural areas highlight the need to better evaluate PBC risk factors and potential barriers in access to specialist care once patients are diagnosed,” researchers wrote.
The study, “A nationwide study of primary biliary cholangitis prevalence, geographic distribution, and health care providers,” was published in Hepatology Communications.
It was funded by Intercept Pharmaceuticals, the developer of Ocaliva (obeticholic acid), a second-line treatment for PBC that was pulled from the European Union market and received a rejection of full approval in the U.S. due to an unfavorable benefit-risk profile.
Vast majority who met PBC criteria are women
PBC is a chronic form of cholangitis — an inflammation of the ducts that run through the liver and carry bile, a fluid that helps digest food, into the intestines. As a result of this inflammation, bile builds up in the liver and leaks into circulation, causing itching and other symptoms.
The frequency of PBC varies “substantially, ranging from 1.91 to 40.2 per 100,000 persons, with discrepancies likely due to differing study methods assessing unique populations and geographic areas,” the researchers wrote.
In the U.S., little is known about where PBC is most common or which doctors treat these patients.
To describe the prevalence, or total number of existing cases, and geographical distribution of PBC in the U.S. as of 2021, as well as which type of care patients receive, the researchers drew upon 2014-2021 data from Komodo’s Healthcare Map. This large database collects medical insurance claims from across the U.S.
Of more than 106 million adults in the Komodo’s Healthcare Map, a total of 41,426 met the criteria for PBC. Most were women (83%) and the majority were white (67.6%), with an average age of 61.9 years. Many had commercial insurance (45.8%) or Medicare (31.6%), a federal health insurance program for people with disabilities and the elderly.
PBC’s prevalence — adjusted for age and gender — in 2021 was 40.9 cases per 100,000 adults, which adds up to an estimated total of 105,506 adults with PBC in the U.S. (including Puerto Rico).
When broken down by region, the Northeast had 43.8 cases per 100,000 adults, the Midwest 43 per 100,000, the West 39.6 per 100,000, and the South 39.5 per 100,000.
While the highest number of cases occurred in dense urban areas, when adjusted for population size, the highest prevalence rates were found in some rural areas in Texas, North Dakota, Colorado, Wyoming, Idaho, Washington, Vermont, and North Carolina.
This suggests PBC may be more common in some rural areas than previously thought, and highlights the need for further studies to “explore potential environmental, behavioral, and/or genetic risk factors,” the researchers wrote.
Researchers urge greater access to specialist care for PBC patients
Data on who provided care were available for 36,700 patients. At their most recent visit, just over half (53.5%) were treated by a gastroenterologist or hepatologist. Of these, many (42.5%) visited a specialist with an academic affiliation — meaning they worked at or with a university hospital or research institution.
Other patients were treated by advanced practice providers such as nurse practitioners or physician assistants (19.3%), general medicine doctors (18.1%), or doctors from other specialties (11.7%). Some of these nonspecialist providers also worked in academic settings.
Looking at all visits — not just the most recent — most patients (83.2%) were treated by a specialist at some point. About half (51.1%) of them saw a specialist in an academic setting. Many patients were also treated by other healthcare providers.
Greater access to specialist care once patients are diagnosed to support awareness of PBC and its management is needed.
Of the 37,929 patients with at least a month of pharmacy coverage at any time during the study period or after their first PBC diagnosis, most (76.1%) received a prescription for ursodeoxycholic acid (UDCA). Marketed under the brand names Urso and Actigall, UDCA is the first-line treatment for PBC.
For PBC therapy overall, nearly three-quarters of the people received one or more prescriptions from a gastroenterologist or hepatologist.
These findings highlight that “most patients with PBC, irrespective of therapy use, were treated by a specialist (gastroenterologist or hepatologist) at some point during the study period, but only approximately half received specialist care in their most recent claim,” the researchers wrote. “Greater access to specialist care once patients are diagnosed to support awareness of PBC and its management is needed.”
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