--- title: "Prevalence & tx: biliary cholangitis in U.S. | Sutter Health" description: "Analyzed a large cohort of pts with PBC receiving routine clinical care. Observed significant differences in PBC prevalence and treatment by sex, race, and age." url: "https://www.sutterhealth.org/research/publications/prevalence-tx-biliary-cholangitis-in-us-1055312312" --- 1. [Home](https://www.sutterhealth.org/) / 2. [Research](https://www.sutterhealth.org/research) / 3. [Research publications](https://www.sutterhealth.org/research/publications) / 4. Prevalence & tx: biliary cholangitis in U.S. # Factors associated with prevalence and treatment of primary biliary cholangitis in United States health systems. Lu M, Li J, Haller IV, Romanelli RJ, VanWormer JJ, Rodriguez CV, Raebel MA, Boscarino JA, Schmidt MA, Daida YG, Sahota A, Vincent J, Bowlus CL, Lindor K, Rupp LB, & Gordon SC; FOLD Investigators. _Clin Gastroenterol Hepatol. pii: S1542-3565(17)31243-0. doi: 10.1016/j.cgh.2017.10.018. \[Epub ahead of print\]_ 2017-10-21 ## Abstract BACKGROUND & AIMS: Reported prevalence of primary biliary cholangitis (PBC) varies widely. Demographic features and treatment patterns are not well characterized in the United States (US). We analyzed data from the Fibrotic Liver Disease (FOLD) consortium, from 11 geographically diverse health systems, to investigate epidemiologic factors and treatment of PBC in the US. METHODS: We developed a validated electronic health record-based classification model to identify patients with PBC in the FOLD consortium database, from 2003 through 2014. We used multivariable modeling to assess the effects of factors associated with PBC prevalence and treatment with ursodeoxycholic acid (UDCA). RESULTS: We identified 4,241 PBC cases among over 14.5 million participants in the FOLD consortium health systems, followed for a median 5 years. The classification model identified patients with PBC with an area under the receiver operating characteristic curve value of 93%, with 94% sensitivity and 87% specificity. The average patient age at diagnosis was 60 years; 21% were Hispanic, 8% were African American, and 7% were Asian American/American Indian/Pacific Islander. Half of the cohort (49%) had increased levels of alkaline phosphatase, and overall, 70% were treated with UDCA. The estimated 12-year prevalence of PBC was 29.3 per 100,000 persons. Adjusted prevalence values were highest among women (42.8 per 100,000), White patients (29.6 per 100,000), and patients 60-70 yrs old (44.7 per 100,000). Prevalence was significantly lower among men and African Americans (10.7 and 19.7 per 100,000, respectively); men and African Americans were also less likely to receive UDCA treatment than women or Whites (odds ratios, 0.6 and 0.5, respectively; P<.05). CONCLUSION: In an analysis of a large cohort of patients with PBC receiving routine clinical care, we observed significant differences in PBC prevalence and treatment by sex, race, and age. [PubMed abstract](https://www.ncbi.nlm.nih.gov/pubmed/29066370) ## Research topics - [Liver Diseases and Transplant](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Liver+Diseases+and+Transplant%5C%22%22) - [Medical Informatics](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Medical+Informatics%5C%22%22) ## Related publications [View all publications](https://www.sutterhealth.org/research-search-results?verticalKey=research_publication) - Publication ### [Ursodeoxycholic acid treatment preferentially improves overall survival among African Americans with primary biliary cholangitis.](https://www.sutterhealth.org/research/publications/ursodeoxycholic-acid-treatment-for-biliary-cholangitis-1055312732) Gordon SC, Wu KH, Lindor K, Bowlus CL, Rodriguez CV, Anderson H, Boscarino JA, Trudeau S, Rupp LB, Haller IV, Romanelli RJ, VanWormer JJ, Schmidt MA, Daida YG, Sahota A, Vincent J, Zhang T, Li J, Lu M; FOLD Investigators. Am J Gastroenterol. 2020 Jan 27. doi: 10.14309/ajg.0000000000000512. \[Epub ahead of print\] 2020 Jan 27 - Publication ### [Increasing prevalence of primary biliary cholangitis and reduced mortality with treatment.](https://www.sutterhealth.org/research/publications/prevalence-and-tx-of-primary-biliary-cholangitis-in-us-1055312359) Lu M, Zhou Y, Haller IV, Romanelli RJ, VanWormer JJ, Rodriguez CV, Anderson H, Boscarino JA, Schmidt MA, Daida YG, Sahota A, Vincent J, Bowlus CL, Lindor K, Zhang T, Trudeau S, Li J, Rupp LB, Gordon SC; FOLD Investigators. Clin Gastroenterol Hepatol. pii: S1542-3565(17)31529-X. doi: 10.1016/j.cgh.2017.12.033. \[Epub ahead of print\] 2017 Dec 22 - Publication ### [Using the PARAFAC2 tensor factorization on EHR audit data to understand PCP desktop work.](https://www.sutterhealth.org/research/publications/parafac2-tensor-factorization-on-ehr-audit-data-pcp-work-1055312822) Perros I, Yan X, Jones JB, Sun J, Stewart WF. J Biomed Inform. 101:103312. doi: 10.1016/j.jbi.2019.103312. Epub 2019 Oct 15. 2020 Jan 01 - Publication ### [Hepatic stellate cells require a stiff environment for myofibroblastic differentiation.](https://www.sutterhealth.org/research/publications/hsc-stiff-env-myofibroblastic-differentiatn-1055312899) Olsen AL, Bloomer SA, Chan EP, Gaça MD, Georges PC, Sackey B, Uemura M, Janmey PA, Wells RG. Am J Physiol Gastrointest Liver Physiol. 301(1):G110-8. doi: 10.1152/ajpgi.00412.2010. Epub 2011 Apr 28. 2011 Jul 01 - Publication ### [Transforming growth factor-beta and substrate stiffness regulate portal fibroblast activation in culture.](https://www.sutterhealth.org/research/publications/tgf-beta-regulate-fibroblast-activation-culture-1055312985) Li Z, Dranoff JA, Chan EP, Uemura M, Sévigny J, Wells RG. Hepatology. 46(4):1246-56. 2007 Oct 01 [View all publications](https://www.sutterhealth.org/research-search-results?verticalKey=research_publication) ```json {"@context":"https://schema.org","@type":"MedicalOrganization","name":"Sutter Health","@id":"https://www.sutterhealth.org/#medicalorganization","url":"https://www.sutterhealth.org","logo":"https://www.sutterhealth.org/static/images/sutter-health-logo.svg","address":{"@type":"PostalAddress","streetAddress":"2200 River Plaza Drive","addressLocality":"Sacramento","addressRegion":"CA","postalCode":"95833","addressCountry":"US"},"areaServed":{"@type":"AdministrativeArea","name":"California"},"sameAs":["https://www.facebook.com/SutterHealth","https://www.instagram.com/sutterhealth/","https://x.com/SutterHealth","https://www.youtube.com/sutterhealth","https://www.linkedin.com/company/sutter-health","https://en.wikipedia.org/wiki/Sutter_Health"]} ``` ```json {"@context":"https://schema.org","@type":"BreadcrumbList","@id":"https://www.sutterhealth.org/research/publications/prevalence-tx-biliary-cholangitis-in-us-1055312312#breadcrumblist","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https://www.sutterhealth.org/"},{"@type":"ListItem","position":2,"name":"Research","item":"https://www.sutterhealth.org/research"},{"@type":"ListItem","position":3,"name":"Research publications","item":"https://www.sutterhealth.org/research/publications"},{"@type":"ListItem","position":4,"name":"Prevalence & tx: biliary cholangitis in U.S."}]} ``` ```json {"@context":"https://schema.org","@type":"MedicalScholarlyArticle","@id":"https://www.sutterhealth.org/research/publications/prevalence-tx-biliary-cholangitis-in-us-1055312312#medicalscholarlyarticle","name":"Factors associated with prevalence and treatment of primary biliary cholangitis in United States health systems.","headline":"Prevalence & tx: biliary cholangitis in U.S.","abstract":"BACKGROUND & AIMS: Reported prevalence of primary biliary cholangitis (PBC) varies widely. Demographic features and treatment patterns are not well characterized in the United States (US). We analyzed data from the Fibrotic Liver Disease (FOLD) consortium, from 11 geographically diverse health systems, to investigate epidemiologic factors and treatment of PBC in the US. METHODS: We developed a validated electronic health record-based classification model to identify patients with PBC in the FOLD consortium database, from 2003 through 2014. We used multivariable modeling to assess the effects of factors associated with PBC prevalence and treatment with ursodeoxycholic acid (UDCA). RESULTS: We identified 4,241 PBC cases among over 14.5 million participants in the FOLD consortium health systems, followed for a median 5 years. The classification model identified patients with PBC with an area under the receiver operating characteristic curve value of 93%, with 94% sensitivity and 87% specificity. The average patient age at diagnosis was 60 years; 21% were Hispanic, 8% were African American, and 7% were Asian American/American Indian/Pacific Islander. Half of the cohort (49%) had increased levels of alkaline phosphatase, and overall, 70% were treated with UDCA. The estimated 12-year prevalence of PBC was 29.3 per 100,000 persons. Adjusted prevalence values were highest among women (42.8 per 100,000), White patients (29.6 per 100,000), and patients 60-70 yrs old (44.7 per 100,000). Prevalence was significantly lower among men and African Americans (10.7 and 19.7 per 100,000, respectively); men and African Americans were also less likely to receive UDCA treatment than women or Whites (odds ratios, 0.6 and 0.5, respectively; P\u003c.05). CONCLUSION: In an analysis of a large cohort of patients with PBC receiving routine clinical care, we observed significant differences in PBC prevalence and treatment by sex, race, and age.","description":"Analyzed a large cohort of pts with PBC receiving routine clinical care. 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