PSC is relatively rare, with an estimated incidence of 1.0 to 1.5 per 100,000 person-years and an estimated prevalence of 6.0 to 16.0 per 100,000 in North America and western Europe.[3]Bowlus CL, Arrivé L, Bergquist A, et al. AASLD practice guidance on primary sclerosing cholangitis and cholangiocarcinoma. Hepatology. 2023 Feb 1;77(2):659-702.
https://www.doi.org/10.1002/hep.32771
http://www.ncbi.nlm.nih.gov/pubmed/36083140?tool=bestpractice.com
However, incidence and prevalence vary geographically. PSC is more common in Northern Europe and North America compared with Southern Europe and Southeast Asia.[9]Tabibian JH, Ali AH, Lindor KD. Primary sclerosing cholangitis, part 1: epidemiology, etiopathogenesis, clinical features, and treatment. Gastroenterol Hepatol (N Y). 2018 May;14(5):293-304.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6034608
http://www.ncbi.nlm.nih.gov/pubmed/29991937?tool=bestpractice.com
In Japan, PSC prevalence is an estimated 0.95 per 100,000.[10]Tanaka A, Takikawa H. Geoepidemiology of primary sclerosing cholangitis: a critical review. J Autoimmun. 2013 Aug 7;46:35-40.
http://www.ncbi.nlm.nih.gov/pubmed/23932346?tool=bestpractice.com
It is more common in men than in women, with a male-to-female ratio of 2:1, although the male-to-female ratio is much lower when inflammatory bowel disease (IBD) is excluded.[3]Bowlus CL, Arrivé L, Bergquist A, et al. AASLD practice guidance on primary sclerosing cholangitis and cholangiocarcinoma. Hepatology. 2023 Feb 1;77(2):659-702.
https://www.doi.org/10.1002/hep.32771
http://www.ncbi.nlm.nih.gov/pubmed/36083140?tool=bestpractice.com
[4]Kingham JG, Kochar N, Gravenor MB. Incidence, clinical patterns and outcomes of primary sclerosing cholangitis in South Wales, United Kingdom. Gastroenterology 2004 Jun;126(7):1929-30.
http://www.ncbi.nlm.nih.gov/pubmed/15188211?tool=bestpractice.com
[6]Bambha K, Kim WR, Talwalkar J, et al. Incidence, clinical spectrum, and outcomes of primary sclerosing cholangitis in a United States community. Gastroenterology. 2003 Nov;125(5):1364-9.
http://www.ncbi.nlm.nih.gov/pubmed/14598252?tool=bestpractice.com
[8]Tischendorf JJ, Hecker H, Kruger M, et al. Characterization, outcome, and prognosis in 273 patients with primary sclerosing cholangitis: a single center study. Am J Gastroenterol. 2007 Jan;102(1):107-14.
http://www.ncbi.nlm.nih.gov/pubmed/17037993?tool=bestpractice.com
[11]Bergquist A, Said K, Broome U. Changes over a 20-year period in the clinical presentation of primary sclerosing cholangitis in Sweden. Scand J Gastroenterol. 2007 Jan;42(1):88-93.
http://www.ncbi.nlm.nih.gov/pubmed/17190768?tool=bestpractice.com
PSC can occur at any age (including childhood), but typically presents between 25 and 45 years, with a median age of 36-39 years at the time of diagnosis.[3]Bowlus CL, Arrivé L, Bergquist A, et al. AASLD practice guidance on primary sclerosing cholangitis and cholangiocarcinoma. Hepatology. 2023 Feb 1;77(2):659-702.
https://www.doi.org/10.1002/hep.32771
http://www.ncbi.nlm.nih.gov/pubmed/36083140?tool=bestpractice.com
Small-duct PSC (accounting for 3% to 16% of cases) is less common than large-duct (classic) PSC.[5]Kaplan GG, Laupland KB, Butzner D, et al. The burden of large and small duct primary sclerosing cholangitis in adults and children: a population-based analysis. Am J Gastroenterol. 2007 May;102(5):1042-9.
http://www.ncbi.nlm.nih.gov/pubmed/17313496?tool=bestpractice.com
[8]Tischendorf JJ, Hecker H, Kruger M, et al. Characterization, outcome, and prognosis in 273 patients with primary sclerosing cholangitis: a single center study. Am J Gastroenterol. 2007 Jan;102(1):107-14.
http://www.ncbi.nlm.nih.gov/pubmed/17037993?tool=bestpractice.com
[11]Bergquist A, Said K, Broome U. Changes over a 20-year period in the clinical presentation of primary sclerosing cholangitis in Sweden. Scand J Gastroenterol. 2007 Jan;42(1):88-93.
http://www.ncbi.nlm.nih.gov/pubmed/17190768?tool=bestpractice.com
[12]Angulo P, Maor-Kendler Y, Lindor K. Small-duct primary sclerosing cholangitis: a long-term follow-up study. Hepatology. 2002 Jun;35(6):1494-500.
http://www.ncbi.nlm.nih.gov/pubmed/12029635?tool=bestpractice.com
PSC-autoimmune hepatitis overlap syndrome occurs more often in children than in adults, accounting for 35% and 5% of cases, respectively.[3]Bowlus CL, Arrivé L, Bergquist A, et al. AASLD practice guidance on primary sclerosing cholangitis and cholangiocarcinoma. Hepatology. 2023 Feb 1;77(2):659-702.
https://www.doi.org/10.1002/hep.32771
http://www.ncbi.nlm.nih.gov/pubmed/36083140?tool=bestpractice.com
Patients with autoimmune hepatitis overlap are typically younger at presentation (mean age at presentation 21.4 years vs. 32.3 years with classic PSC).[7]Floreani A, Rizzotto ER, Ferrara F, et al. Clinical course and outcome of autoimmune hepatitis/primary sclerosing cholangitis overlap syndrome. Am J Gastroenterol. 2005 Jul;100(7):1516-22.
http://www.ncbi.nlm.nih.gov/pubmed/15984974?tool=bestpractice.com
Many patients with PSC have associated IBD (typically ulcerative colitis) - estimates range from 50% to over 80% - and it is estimated that 0.6% to 4.3% of patients with IBD have PSC.[2]European Association for the Study of the Liver. EASL clinical practice guidelines on sclerosing cholangitis. J Hepatol. 2022 Sep;77(3):761-806.
https://www.doi.org/10.1016/j.jhep.2022.05.011
http://www.ncbi.nlm.nih.gov/pubmed/35738507?tool=bestpractice.com
[3]Bowlus CL, Arrivé L, Bergquist A, et al. AASLD practice guidance on primary sclerosing cholangitis and cholangiocarcinoma. Hepatology. 2023 Feb 1;77(2):659-702.
https://www.doi.org/10.1002/hep.32771
http://www.ncbi.nlm.nih.gov/pubmed/36083140?tool=bestpractice.com
[9]Tabibian JH, Ali AH, Lindor KD. Primary sclerosing cholangitis, part 1: epidemiology, etiopathogenesis, clinical features, and treatment. Gastroenterol Hepatol (N Y). 2018 May;14(5):293-304.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6034608
http://www.ncbi.nlm.nih.gov/pubmed/29991937?tool=bestpractice.com
[13]Karlsen TH, Folseraas T, Thorburn D, et al. Primary sclerosing cholangitis - a comprehensive review. J Hepatol. 2017 Aug 10;67(6):1298-323.
https://www.journal-of-hepatology.eu/article/S0168-8278(17)32196-7/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/28802875?tool=bestpractice.com
The association with IBD varies geographically, with a lower association in Asian and southern European patients.[14]Escorsell A, Pares A, Rodes J, et al. Epidemiology of primary sclerosing cholangitis in Spain. Spanish Association for the Study of the Liver. J Hepatol. 1994 Nov;21(5):787-91.
http://www.ncbi.nlm.nih.gov/pubmed/7890895?tool=bestpractice.com
[15]Takikawa H. Characteristics of primary sclerosing cholangitis in Japan. Hepatol Res. 2007 Oct;37 Suppl 3:S470-3.
http://www.ncbi.nlm.nih.gov/pubmed/17931205?tool=bestpractice.com