When primary biliary cholangitis (PBC) was first discovered, it was considered a Western disease, with most studies conducted in Northern Europe and North America. It has primarily been seen as a disease of middle-aged Caucasian women, with few cases reported in Asia.
While more research into PBC in different ethnic groups is required, epidemiological data in recent years show that the disease is present worldwide. Recent studies also suggest that the worldwide prevalence of PBC is increasing, which may be related to greater disease awareness among health professionals, earlier diagnosis and patients living longer with PBC.
PBC is a rare, chronic liver disease that progressively attacks the liver’s small bile ducts and mainly affects middle-aged women aged 35 to 55 years. As a result of a buildup in bile, the liver tissue becomes inflamed and scarred, leading to fibrosis and cirrhosis and potentially, liver failure. No exact cause has been identified, but environmental and genetic risk factors are thought to play an important role in its onset.
PBC is an autoimmune disease with no cure, but medical treatment helps slow disease progression, and lifestyle changes help manage symptoms. Often PBC is diagnosed without any symptoms being reported and symptoms can appear several years after PBC has been detected. The onset of symptoms such as fatigue, pruritus (itchy skin), brain fog, joint pain, stomach discomfort and jaundice can heavily impact quality of life.
According to the available epidemiological studies on PBC, the disease is more common in the White population, in Western countries. While studies on PBC in different ethnic populations are limited and data scarce, some insights are available.
Insights into PBC in different ethnic groups
Both Hispanic and African American people living with PBC have shown to have a more severe version of the disease in comparison with white patients, with a heavier symptom burden.
Hispanic patients are also less likely to respond to first-line treatment of ursodeoxycholic acid (UDCA), leading to a greater risk of disease progression.
Additionally, African Americans with PBC have a lower hospitalization rate compared to Hispanic patients.
Possible contributing factors such as genetic variations, socioeconomic status and access to care require more research. Environmental factors were not found to make a difference.
Rates of PBC in China also appear to be rising, with a much greater incidence reported in China than in South Korea. However, it is also possible that underreporting and delays in diagnosis may be implicated.
