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Clin Gastroenterol Hepatol. 2018 Aug;16(8):1333-1341.e6. doi: 10.1016/j.cgh.2017.10.018. Epub 2017 Oct 21.

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

Author information

1
Department of Public Health Sciences, Henry Ford Health System, Detroit, Michigan. Electronic address: mlu1@hfhs.org.
2
Department of Public Health Sciences, Henry Ford Health System, Detroit, Michigan.
3
Essentia Institute of Rural Health, Essentia Health, Duluth, Minnesota.
4
Palo Alto Medical Foundation Research Institute, Palo Alto, California.
5
Marshfield Clinic Research Foundation, Marshfield, Wisconsin.
6
Center for Health Research, Kaiser Permanente Mid-Atlantic Research Institute, Rockville, Maryland.
7
Institute for Health Research, Kaiser Permanente Colorado, Denver, Colorado.
8
Department of Epidemiology and Health Services Research, Geisinger Clinic, Danville, Pennsylvania.
9
Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
10
Center for Health Research Hawai'i, Kaiser Permanente, Honolulu, Hawaii.
11
Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, California.
12
Baylor, Scott & White Research Institute, Temple, Texas.
13
University of California Davis School of Medicine, Sacramento, California.
14
College of Health Solutions, Arizona State University, Phoenix, Arizona.
15
Center for Health Policy and Health Services Research, Henry Ford Health System, Detroit, Michigan.
16
Department of Gastroenterology and Hepatology, Henry Ford Health System, Detroit, Michigan.

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

PMID:
29066370
DOI:
10.1016/j.cgh.2017.10.018

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