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Scand J Gastroenterol ; 49(10): 1245-54, 2014 Oct.
Article in English | MEDLINE | ID: mdl-25123213

ABSTRACT

BACKGROUND AND AIMS: Epidemiological data on autoimmune hepatitis (AIH) are scarce. In this study, we determined the clinical and epidemiological characteristics of AIH patients in the Netherlands (16.7 million inhabitants). METHODS: Clinical characteristics were collected from 1313 AIH patients (78% females) from 31 centers, including all eight academic centers in the Netherlands. Additional data on ethnicity, family history and symptoms were obtained by the use of a questionnaire. RESULTS: The prevalence of AIH was 18.3 (95% confidential interval [CI]: 17.3-19.4) per 100,000 with an annual incidence of 1.1 (95% CI: 0.5-2) in adults. An incidence peak was found in middle-aged women. At diagnosis, 56% of patients had fibrosis and 12% cirrhosis in liver biopsy. Overall, 1% of patients developed HCC and 3% of patients underwent liver transplantation. Overlap with primary biliary cirrhosis and primary sclerosing cholangitis was found in 9% and 6%, respectively. The clinical course did not differ between Caucasian and non-Caucasian patients. Other autoimmune diseases were found in 26% of patients. Half of the patients reported persistent AIH-related symptoms despite treatment with a median treatment period of 8 years (range 1-44 years). Familial occurrence was reported in three cases. CONCLUSION: This is the largest epidemiological study of AIH in a geographically defined region and demonstrates that the prevalence of AIH in the Netherlands is uncommon. Although familial occurrence of AIH is extremely rare, our twin data may point towards a genetic predisposition. The high percentage of patients with cirrhosis or fibrosis at diagnosis urges the need of more awareness for AIH.


Subject(s)
Carcinoma, Hepatocellular/epidemiology , Hepatitis, Autoimmune/epidemiology , Liver Neoplasms/epidemiology , Adolescent , Adult , Age Factors , Aged , Aged, 80 and over , Alanine Transaminase/blood , Alkaline Phosphatase/blood , Anti-Inflammatory Agents/therapeutic use , Antibodies, Antinuclear/blood , Asian People/statistics & numerical data , Black People/statistics & numerical data , Child , Child, Preschool , Fatigue/etiology , Female , Hepatitis, Autoimmune/diagnosis , Hepatitis, Autoimmune/drug therapy , Hepatitis, Autoimmune/genetics , Humans , Immunoglobulin G/blood , Immunosuppressive Agents/therapeutic use , Incidence , Jaundice/etiology , Liver Cirrhosis/epidemiology , Male , Middle Aged , Netherlands/epidemiology , Prevalence , Retrospective Studies , Sex Factors , South America/ethnology , Surveys and Questionnaires , White People/statistics & numerical data , Young Adult
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