A new study published in BMJ Open Gastroenterology suggests that many people with primary biliary cholangitis (PBC) are not being monitored as closely as guidelines recommend while taking ursodeoxycholic acid (UDCA), the standard first-line treatment for the condition.
Researchers reviewed medical records from nearly 1,700 adults in the United States with confirmed PBC treated between 2018 and 2021 to see how often patients had liver tests to check if UDCA was working. Specifically, the authors looked at alkaline phosphatase (ALP), a key blood marker used to gauge treatment response. According to current clinical guidelines, ALP should be measured regularly to make sure the medication is helping slow disease progression.
Learn more about PBC treatment and care
However, the study found that just 52% of those studied had appropriate testing in the first year of treatment. That number improved somewhat to 67% for people who had been on UDCA longer than a year, but that still left a substantial portion without recommended monitoring.
The findings also showed that those who received care from liver specialists, such as gastroenterologists or hepatologists, were much more likely to have proper monitoring than those managed by general practitioners.
In the first year, about 54% of people seeing liver specialists had the recommended testing, compared with 45% of those who didn’t. Over the longer term, the difference grew wider, with specialist-monitored patients reaching up to 78% adherence versus as low as 30% among those with nonspecialist care.
The authors conclude that in this large PBC cohort, there are “concerning levels of non-adherence” to guideline-recommended biochemical monitoring of UDCA response. Without consistent ALP testing, doctors may miss early signs that UDCA isn’t working well enough, delaying potential treatment changes or add-on therapies that could improve long-term outcomes.
The researchers note that increased education among general practitioners on the importance of routine ALP monitoring, as well as other strategies to increase rates of biochemical testing, could help.
“Novel solutions — possibly incorporating automated alerts to both providers and patients using the EMR — are urgently needed to improve monitoring rates across all stages of PBC care,” they concluded.
Sign up here to get the latest news, perspectives, and information about PBC sent directly to your inbox. Registration is free and only takes a minute.
