Gastroenterology

Gastroenterology

Volume 119, Issue 6, December 2000, Pages 1631-1636
Gastroenterology

Liver, Pancreas, and Biliary Tract
Epidemiology and natural history of primary biliary cirrhosis in a U.S. community,☆☆

https://doi.org/10.1053/gast.2000.20197Get rights and content

Abstract

Background & Aims: The epidemiology of primary biliary cirrhosis (PBC) has not been studied systematically in the United States. We report the incidence and prevalence of this condition in the general population. We also examined the validity of the Mayo natural history model for PBC among these unselected patients from the community. Methods: The Rochester Epidemiology Project entails a computerized index of diagnoses from the health care encounters of residents of Olmsted County, Minnesota. For potential cases identified using this database, the complete (inpatient and outpatient) medical records were reviewed to verify the diagnosis and extract information necessary for the application of the Mayo model. We estimated the incidence and prevalence of PBC in this population and compared the actual survival of patients with PBC in the community with the survival predicted for PBC patients by the Mayo natural history model. Results: The age-adjusted (to 1990 U.S. whites) incidence of PBC per 100,000 person-years for years 1975–1995 was 4.5 (95% confidence interval [CI], 3.1–5.9) for women, 0.7 (95% CI, 0.1–1.3) for men, and 2.7 (95% CI, 1.9–3.5) overall. The age- and sex-adjusted prevalence per 100,000 persons as of 1995 was 65.4 (95% CI, 43.0–87.9) for women, 12.1 (95% CI, 1.1–23.1) for men, and 40.2 (95% CI, 27.2–53.1) overall. The Mayo natural history model accurately predicted the actual survival of these patients. Conclusions: This first description of the epidemiology of PBC in the United States indicates that its incidence and prevalence in this country are among the highest reported. Outcomes among these unselected patients from a community population further validated the Mayo natural history model of PBC.

GASTROENTEROLOGY 2000;119:1631-1636

Section snippets

Case ascertainment

Population-based epidemiologic research can be conducted in Olmsted County, Minnesota, because medical care is virtually self-contained within the community and there are relatively few providers. For example, most gastroenterology care is provided by the Mayo Clinic, which has maintained a common medical record system with its 2 large affiliated hospitals in the community (St. Mary's and Rochester Methodist) for more than 90 years. The diagnoses and surgical procedures recorded in these

Patient characteristics

Between 1975 and 1995, 46 Olmsted County residents had PBC diagnosed for the first time. All but one patient had PBC diagnosed clinically and thus was identified by the diagnostic index of the Rochester Epidemiology Project. The remaining patient who had a high AMA titer and met the study inclusion criteria was not given the diagnosis when he was evaluated in the late 1970s. Table 1 summarizes the demographic and clinical characteristics of these patients.The majority were women (41/46, 89%).

Discussion

We describe the incidence and prevalence of PBC in the United States. The epidemiology of PBC has been studied mainly in Europe, where the health care delivery system is such that tertiary care centers typically serve a relatively defined population. In North America, health care delivery tends to be more fragmented and such estimation has not been feasible because of the difficulty of collaboration among large number of providers in heterogeneous practice settings. In Olmsted County, however,

Acknowledgements

The authors thank Gwen Boe for her dedicated work in the preparation of the manuscript.

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    Address requests for reprints to: W. Ray Kim, M.D., Division of Gastroenterology and Hepatology (Ch10), Mayo Clinic and Foundation, 200 First Street S.W., Rochester, Minnesota 55905. e-mail: [email protected]; fax: (507) 266-2810.

    ☆☆

    Supported by grants DK34238 and AR30582 from the National Institutes of Health and the Mayo Foundation for Medical Research and Education.

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