The prevalence of PBC in the US is approximately 35 per 100,000 of the population overall, with an incidence of approximately 3 to 5 cases per 100,000 per year.[3]Kim WR, Lindor KD, Locke GR 3rd, et al. Epidemiology and natural history of primary biliary cirrhosis in a US community. Gastroenterology. 2000;119:1631-1636.
http://www.ncbi.nlm.nih.gov/pubmed/11113084?tool=bestpractice.com
[4]Lu M, Li J, Haller IV, et al. Factors associated with prevalence and treatment of primary biliary cholangitis in United States health systems. Clin Gastroenterol Hepatol. 2018 Aug;16(8):1333-41.e6.
https://www.cghjournal.org/article/S1542-3565(17)31243-0/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/29066370?tool=bestpractice.com
It is significantly more common in women than in men (up to a tenfold difference); however, men appear to have a poorer prognosis.[4]Lu M, Li J, Haller IV, et al. Factors associated with prevalence and treatment of primary biliary cholangitis in United States health systems. Clin Gastroenterol Hepatol. 2018 Aug;16(8):1333-41.e6.
https://www.cghjournal.org/article/S1542-3565(17)31243-0/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/29066370?tool=bestpractice.com
[5]Durazzo M, Belci P, Collo A, et al. Gender specific medicine in liver diseases: a point of view. World J Gastroenterol. 2014 Mar 7;20(9):2127-35.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3942817
http://www.ncbi.nlm.nih.gov/pubmed/24605011?tool=bestpractice.com
[6]Muratori P, Granito A, Pappas G, et al. Clinical and serological profile of primary biliary cirrhosis in men. QJM. 2007 Aug;100(8):534-5.
https://academic.oup.com/qjmed/article/100/8/534/1522064?login=false
http://www.ncbi.nlm.nih.gov/pubmed/17609225?tool=bestpractice.com
Studies suggest that at least one in 1000 women over the age of 40 years has PBC.[7]Boonstra K, Beuers U, Ponsioen CY. Epidemiology of primary sclerosing cholangitis and primary biliary cirrhosis: a systematic review. J Hepatol. 2012 May;56(5):1181-88.
https://www.journal-of-hepatology.eu/article/S0168-8278(12)00043-8/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/22245904?tool=bestpractice.com
Peak incidence is around age 40 years.[7]Boonstra K, Beuers U, Ponsioen CY. Epidemiology of primary sclerosing cholangitis and primary biliary cirrhosis: a systematic review. J Hepatol. 2012 May;56(5):1181-88.
https://www.journal-of-hepatology.eu/article/S0168-8278(12)00043-8/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/22245904?tool=bestpractice.com
Median age at diagnosis is 65 years.[2]Hirschfield GM, Dyson JK, Alexander GJM, et al. The British Society of Gastroenterology/UK-PBC primary biliary cholangitis treatment and management guidelines. Gut. 2018 Sep;67(9):1568-94.
https://gut.bmj.com/content/67/9/1568.long
http://www.ncbi.nlm.nih.gov/pubmed/29593060?tool=bestpractice.com
Patients can present from their 20s onward and younger patients may experience more aggressive, less treatment-responsive disease.[2]Hirschfield GM, Dyson JK, Alexander GJM, et al. The British Society of Gastroenterology/UK-PBC primary biliary cholangitis treatment and management guidelines. Gut. 2018 Sep;67(9):1568-94.
https://gut.bmj.com/content/67/9/1568.long
http://www.ncbi.nlm.nih.gov/pubmed/29593060?tool=bestpractice.com
There are anecdotal reports only of the disease in children.
Data on ethnic variations are limited, but risk for PBC appears to be broadly similar (although not identical) in different ethnic groups within the same geographical environment (an observation in keeping with an environmental factor being involved in disease pathogenesis). The possibility of the disease should be considered in all ethnic groups.
The incidence and prevalence of PBC in European countries is slightly lower than that in the US, with a prevalence of 22 cases per 100,000, and an annual incidence of 1 to 2 new cases per 100,000 people.[8]Gazda J, Drazilova S, Janicko M, et al. The epidemiology of primary biliary cholangitis in European countries: a systematic review and meta-analysis. Can J Gastroenterol Hepatol. 2021 Jun 19;2021:9151525.
https://www.hindawi.com/journals/cjgh/2021/9151525
http://www.ncbi.nlm.nih.gov/pubmed/34239845?tool=bestpractice.com
In both Europe and the US the prevalence of PBC is increasing, which may be due to earlier diagnosis and decreased mortality due to treatment with ursodiol.[9]Lu M, Zhou Y, Haller IV, et al. Increasing prevalence of primary biliary cholangitis and reduced mortality with treatment. Clin Gastroenterol Hepatol. 2018 Aug;16(8):1342-50.e1.
https://www.cghjournal.org/article/S1542-3565(17)31529-X/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/29277621?tool=bestpractice.com
The disease is substantially less common (although not well studied) in African and Asian countries, compared with Europe and the US. However, the incidence of the disease has been widely reported to be increasing in China; one meta-analysis of PBC in the Asia-Pacific region showed the prevalence was 19 per 100,000 in Japan and China.[10]Wang L, Gershwin ME, Wang FS. Primary biliary cholangitis in China. Curr Opin Gastroenterol. 2016 May;32(3):195-203.
http://www.ncbi.nlm.nih.gov/pubmed/26885951?tool=bestpractice.com
[11]Cheung KS, Seto WK, Fung J, et al. Epidemiology and natural history of primary biliary cholangitis in the Chinese: a territory-based study in Hong Kong between 2000 and 2015. Clin Transl Gastroenterol. 2017 Aug 31;8(8):e116.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5587844
http://www.ncbi.nlm.nih.gov/pubmed/28858291?tool=bestpractice.com
[12]Zeng N, Duan W, Chen S, et al. Epidemiology and clinical course of primary biliary cholangitis in the Asia-Pacific region: a systematic review and meta-analysis. Hepatol Int. 2019 Nov;13(6):788-99.
http://www.ncbi.nlm.nih.gov/pubmed/31552558?tool=bestpractice.com
PBC is associated with immune-system and metabolic disorders, including thyroid disease, scleroderma, Sjögren syndrome/sicca complex (dry eyes and mouth), celiac disease, and osteoporosis.[13]Gershwin ME, Selmi C, Worman HJ, et al. Risk factors and comorbidities in primary biliary cirrhosis: a controlled interview-based study of 1032 patients. Hepatology. 2005;42:1194-1202.
http://onlinelibrary.wiley.com/doi/10.1002/hep.20907/full
http://www.ncbi.nlm.nih.gov/pubmed/16250040?tool=bestpractice.com
[14]Lindor KD, Bowlus CL, Boyer J, et al. Primary biliary cholangitis: 2018 practice guidance from the American Association for the Study of Liver Diseases. Hepatology. 2019 Jan;69(1):394-419.
https://aasldpubs.onlinelibrary.wiley.com/doi/full/10.1002/hep.30145
http://www.ncbi.nlm.nih.gov/pubmed/30070375?tool=bestpractice.com
[15]European Association for the Study of the Liver. EASL clinical practice guidelines: the diagnosis and management of patients with primary biliary cholangitis. J Hepatol. 2017 Jul;67(1):145-72.
http://www.ncbi.nlm.nih.gov/pubmed/28427765?tool=bestpractice.com
In one controlled interview-based study of 1032 patients, autoimmune diseases were found in 32% of PBC cases, compared with 13% of controls (P <0.0001).[13]Gershwin ME, Selmi C, Worman HJ, et al. Risk factors and comorbidities in primary biliary cirrhosis: a controlled interview-based study of 1032 patients. Hepatology. 2005;42:1194-1202.
http://onlinelibrary.wiley.com/doi/10.1002/hep.20907/full
http://www.ncbi.nlm.nih.gov/pubmed/16250040?tool=bestpractice.com