Factors Associated With Prevalence and Treatment of Primary Biliary Cholangitis in United States Health Systems

FOLD Investigators

Research output: Contribution to journalArticle

6 Citations (Scopus)

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, drawn 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 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 4241 PBC cases among over 14.5 million patients in FOLD health systems; median follow-up was 5 years. Accuracy of the classification model was excellent, with an area under the receiver operating characteristic curve value of 93%, 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 elevated 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 years old (44.7 per 100,000). Prevalence was significantly lower among men and African Americans (10.7 and 19.7 per 100,000, respectively) than women and whites; men and African Americans were also less likely to receive UDCA treatment (odds ratios, 0.6 and 0.5, respectively; P <.05). Conclusions: 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 gender, race, and age.

Original languageEnglish (US)
JournalClinical Gastroenterology and Hepatology
DOIs
StateAccepted/In press - Jan 1 2018

Fingerprint

Cholangitis
Health
Ursodeoxycholic Acid
African Americans
Liver Diseases
Therapeutics
Epidemiologic Factors
Asian Americans
North American Indians
Electronic Health Records
Hispanic Americans
ROC Curve
Alkaline Phosphatase
Odds Ratio
Demography
Databases
Sensitivity and Specificity

Keywords

  • Autoimmune Disease
  • Classification and Regression Trees
  • Electronic Health Records
  • Gender
  • Primary Biliary Cirrhosis
  • Racial Disparities

ASJC Scopus subject areas

  • Hepatology
  • Gastroenterology

Cite this

@article{2db4c525910d405ba848dfd2b1419945,
title = "Factors Associated With Prevalence and Treatment of Primary Biliary Cholangitis in United States Health Systems",
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, drawn 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 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 4241 PBC cases among over 14.5 million patients in FOLD health systems; median follow-up was 5 years. Accuracy of the classification model was excellent, with an area under the receiver operating characteristic curve value of 93{\%}, 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 elevated 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 years old (44.7 per 100,000). Prevalence was significantly lower among men and African Americans (10.7 and 19.7 per 100,000, respectively) than women and whites; men and African Americans were also less likely to receive UDCA treatment (odds ratios, 0.6 and 0.5, respectively; P <.05). Conclusions: 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 gender, race, and age.",
keywords = "Autoimmune Disease, Classification and Regression Trees, Electronic Health Records, Gender, Primary Biliary Cirrhosis, Racial Disparities",
author = "{FOLD Investigators} and Mei Lu and Jia Li and Haller, {Irina V.} and Romanelli, {Robert J.} and VanWormer, {Jeffrey J.} and Rodriguez, {Carla V.} and Raebel, {Marsha A.} and Boscarino, {Joseph A.} and Schmidt, {Mark A.} and Daida, {Yihe G.} and Amandeep Sahota and Jennifer Vincent and Bowlus, {Christopher L.} and Keith Lindor and Rupp, {Loralee B.} and Gordon, {Stuart C.}",
year = "2018",
month = "1",
day = "1",
doi = "10.1016/j.cgh.2017.10.018",
language = "English (US)",
journal = "Clinical Gastroenterology and Hepatology",
issn = "1542-3565",
publisher = "W.B. Saunders Ltd",

}

TY - JOUR

T1 - Factors Associated With Prevalence and Treatment of Primary Biliary Cholangitis in United States Health Systems

AU - FOLD Investigators

AU - Lu, Mei

AU - Li, Jia

AU - Haller, Irina V.

AU - Romanelli, Robert J.

AU - VanWormer, Jeffrey J.

AU - Rodriguez, Carla V.

AU - Raebel, Marsha A.

AU - Boscarino, Joseph A.

AU - Schmidt, Mark A.

AU - Daida, Yihe G.

AU - Sahota, Amandeep

AU - Vincent, Jennifer

AU - Bowlus, Christopher L.

AU - Lindor, Keith

AU - Rupp, Loralee B.

AU - Gordon, Stuart C.

PY - 2018/1/1

Y1 - 2018/1/1

N2 - 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, drawn 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 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 4241 PBC cases among over 14.5 million patients in FOLD health systems; median follow-up was 5 years. Accuracy of the classification model was excellent, with an area under the receiver operating characteristic curve value of 93%, 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 elevated 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 years old (44.7 per 100,000). Prevalence was significantly lower among men and African Americans (10.7 and 19.7 per 100,000, respectively) than women and whites; men and African Americans were also less likely to receive UDCA treatment (odds ratios, 0.6 and 0.5, respectively; P <.05). Conclusions: 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 gender, race, and age.

AB - 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, drawn 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 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 4241 PBC cases among over 14.5 million patients in FOLD health systems; median follow-up was 5 years. Accuracy of the classification model was excellent, with an area under the receiver operating characteristic curve value of 93%, 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 elevated 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 years old (44.7 per 100,000). Prevalence was significantly lower among men and African Americans (10.7 and 19.7 per 100,000, respectively) than women and whites; men and African Americans were also less likely to receive UDCA treatment (odds ratios, 0.6 and 0.5, respectively; P <.05). Conclusions: 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 gender, race, and age.

KW - Autoimmune Disease

KW - Classification and Regression Trees

KW - Electronic Health Records

KW - Gender

KW - Primary Biliary Cirrhosis

KW - Racial Disparities

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U2 - 10.1016/j.cgh.2017.10.018

DO - 10.1016/j.cgh.2017.10.018

M3 - Article

C2 - 29066370

AN - SCOPUS:85044601711

JO - Clinical Gastroenterology and Hepatology

JF - Clinical Gastroenterology and Hepatology

SN - 1542-3565

ER -