--- title: "Prevalence and tx of primary biliary cholangitis in US. | Sutter Health" description: "Prevalence of PBC increased from 2004-2014. Pt demographic and clinical characteristics, as well as ursodeoxycholic acid tx, affected mortality." url: "https://www.sutterhealth.org/research/publications/prevalence-and-tx-of-primary-biliary-cholangitis-in-us-1055312359" --- 1. [Home](https://www.sutterhealth.org/) / 2. [Research](https://www.sutterhealth.org/research) / 3. [Research publications](https://www.sutterhealth.org/research/publications) / 4. Prevalence and tx of primary biliary cholangitis in US. # Increasing prevalence of primary biliary cholangitis and reduced mortality with treatment. 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. \[Epub ahead of print\]_ 2017-12-22 ## Abstract BACKGROUND & AIMS: There are few data from longitudinal studies of trends in primary biliary cholangitis (PBC) among patients under routine clinical care in the United States (US). We collected data from the Fibrotic Liver Disease consortium to investigate changes in incidence and prevalence of PBC and the effects of patient demographics, clinical features, and treatment on mortality. METHODS: We collected demographic and clinical data for the general patient population as well as PBC patients receiving care from 11 health systems in different regions of the US (Northeast, Midwest, Northwest, and South) from January 1, 2003 through December 31, 2014. Annual percentage changes in PBC prevalence and incidence were estimated using join-point Poisson regression. Differences based on race, age, and sex were calculated with rate ratios. All-cause mortality was estimated using Cox regression with adjustment for patient characteristics and treatment with ursodeoxycholic acid (UDCA). Propensity scores were used to adjust for treatment selection bias. Analyses were adjusted by geographic regions. RESULTS: In our racially diverse cohort of 3488 patients with PBC (21% Hispanic, 8% African American, 7% Asian American), 70% had ever received UDCA. From 2006 through 2014, the prevalence of PBC increased from 21.7 to 39.2 per 100,000 persons. Adjusted annual percentage changes in prevalence differed among age groups (≤40 years, 41-50 years, 51-60 years, 61-70 years, and >70 years), ranging from 3.0% to 7.5% (P<.05). Incidence did not change significantly during the study period (3.7 vs 3.4 per 100,000 person-years in 2006 and 2014, respectively; P=.09). Ratios of prevalence for women vs men (3.9:1) and incidence for women vs men (3.2:1) were consistent over the study period. Among African Americans, the prevalence of PBC increased from 16.9 to 30.8 per 100,000 during the study period, and annual incidence ranged from 2.6 to 6.6 per 100,000 person-years. In adjusted analyses, increased level of alkaline phosphatase at baseline was associated with significantly higher mortality (adjusted hazard ratios \[aHR\]=1.24; 95% CI, 1.04-1.48 for patients with 1-2 times the upper limit of normal and aHR=2.27; 95% CI, 1.88-2.73 for patients with more than 3 times the upper limit of normal). UDCA treatment was associated with significantly reduced mortality (aHR=0.57; 95% CI, 0.52-0.64). CONCLUSION: In an analysis of data from patients receiving routine clinical care in Fibrotic Liver Disease Consortium health systems, we found that prevalence of PBC increased from 2004 through 2014, despite steady incidence. Patient demographic and clinical characteristics, as well as UDCA treatment, affected mortality. [PubMed abstract](https://www.ncbi.nlm.nih.gov/pubmed/29277621) ## Research topics - [Autoimmune Disease](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Autoimmune+Disease%5C%22%22) - [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) - [Women's Health](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Women%27s+Health%5C%22%22) ## Related publications [View all publications](https://www.sutterhealth.org/research-search-results?verticalKey=research_publication) - Publication ### [Factors associated with prevalence and treatment of primary biliary cholangitis in United States health systems.](https://www.sutterhealth.org/research/publications/prevalence-tx-biliary-cholangitis-in-us-1055312312) 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 Oct 21 - Publication ### [The iceberg of health care utilization in women with urinary incontinence.](https://www.sutterhealth.org/research/publications/health-care-utilization-in-women-with-ui-is-low-1055312611) Minassian VA, Yan X, Lichtenfeld MJ, Sun H, Stewart WF. Int Urogynecol J. 23(8):1087-93. doi: 10.1007/s00192-012-1743-x. Epub 2012 Apr 12. 2012 Aug 01 - 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 ### [Clinical validation of the Bladder Health Survey for urinary incontinence in a population sample of women.](https://www.sutterhealth.org/research/publications/clinical-validation-of-bladder-health-survey-for-ui-1055312569) Minassian VA, Yan XS, Sun H, Platte RO, Stewart WF. Int Urogynecol J. 27(3):453-61. doi: 10.1007/s00192-015-2849-8. Epub 2015 Sep 19. 2016 Mar 01 - Publication ### [Physicians’ well-being linked to in-basket messages generated by algorithms In electronic health records.](https://www.sutterhealth.org/research/publications/md-well-being-and-in-basket-messages-from-ehr-algorithms-1055312699) Tai-Seale M, Dillon EC, Yang Y, Nordgren R, Steinberg R, Nauenberg T, Lee TC, Meehan A, Li J, Chan AS, Frosch D. Health Aff. 38(7): https://doi.org/10.1377/hlthaff.2018.05509. 2019 Jul 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-and-tx-of-primary-biliary-cholangitis-in-us-1055312359#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 and tx of primary biliary cholangitis in US."}]} ``` ```json {"@context":"https://schema.org","@type":"MedicalScholarlyArticle","@id":"https://www.sutterhealth.org/research/publications/prevalence-and-tx-of-primary-biliary-cholangitis-in-us-1055312359#medicalscholarlyarticle","name":"Increasing prevalence of primary biliary cholangitis and reduced mortality with treatment.","headline":"Prevalence and tx of primary biliary cholangitis in US.","abstract":"BACKGROUND & AIMS: There are few data from longitudinal studies of trends in primary biliary cholangitis (PBC) among patients under routine clinical care in the United States (US). We collected data from the Fibrotic Liver Disease consortium to investigate changes in incidence and prevalence of PBC and the effects of patient demographics, clinical features, and treatment on mortality. METHODS: We collected demographic and clinical data for the general patient population as well as PBC patients receiving care from 11 health systems in different regions of the US (Northeast, Midwest, Northwest, and South) from January 1, 2003 through December 31, 2014. Annual percentage changes in PBC prevalence and incidence were estimated using join-point Poisson regression. Differences based on race, age, and sex were calculated with rate ratios. All-cause mortality was estimated using Cox regression with adjustment for patient characteristics and treatment with ursodeoxycholic acid (UDCA). Propensity scores were used to adjust for treatment selection bias. Analyses were adjusted by geographic regions. RESULTS: In our racially diverse cohort of 3488 patients with PBC (21% Hispanic, 8% African American, 7% Asian American), 70% had ever received UDCA. From 2006 through 2014, the prevalence of PBC increased from 21.7 to 39.2 per 100,000 persons. Adjusted annual percentage changes in prevalence differed among age groups (≤40 years, 41-50 years, 51-60 years, 61-70 years, and >70 years), ranging from 3.0% to 7.5% (P\u003c.05). Incidence did not change significantly during the study period (3.7 vs 3.4 per 100,000 person-years in 2006 and 2014, respectively; P=.09). Ratios of prevalence for women vs men (3.9:1) and incidence for women vs men (3.2:1) were consistent over the study period. Among African Americans, the prevalence of PBC increased from 16.9 to 30.8 per 100,000 during the study period, and annual incidence ranged from 2.6 to 6.6 per 100,000 person-years. In adjusted analyses, increased level of alkaline phosphatase at baseline was associated with significantly higher mortality (adjusted hazard ratios [aHR]=1.24; 95% CI, 1.04-1.48 for patients with 1-2 times the upper limit of normal and aHR=2.27; 95% CI, 1.88-2.73 for patients with more than 3 times the upper limit of normal). UDCA treatment was associated with significantly reduced mortality (aHR=0.57; 95% CI, 0.52-0.64). CONCLUSION: In an analysis of data from patients receiving routine clinical care in Fibrotic Liver Disease Consortium health systems, we found that prevalence of PBC increased from 2004 through 2014, despite steady incidence. Patient demographic and clinical characteristics, as well as UDCA treatment, affected mortality.","description":"Prevalence of PBC increased from 2004-2014. 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