Socio-economic characteristics, quality of life, and state of knowledge of patients with hepatitis C viral infection in Germany - Socio-economical aspects in hepatitis C

Background: Little is known as yet about the socio-economic consequences for patients with hepatitis C in Germany. Aims and Methods: The study of the Deutsche Leberhilfe e.V., supported by the federal hepatitis competence net, prospectively analyzed questionnaires about quality-of-life, education and work situation, insurances, and various other socio-economical aspects of patients with chronic hepatitis C. The questionnaire included questions about the information status of patients concerning hepatitis C in general and their individual disease. Overall, 1500 questionnaires were distributed by clinics, general practitioners, patient-support groups and via the internet; 714 were sent back and analyzed. Results: Most of the 714 patients were born in Germany; 56% were women and 44% men, with a mean age of 52 years and a hepatitis duration of 18 years. More than 60% of subjects younger than 65 years of age did not have a regular job, and 27 % were already retired. Only 47 % had a sufficient retirement insurance, whereas almost all had a health insurance. Only 12 % had an insurance covering work invalidity, and of those who had applied for the latter insurance, it was denied in 29%. About 80% of subjects reported that the hepatitis disturbed various aspects of their life. Only 4% considered the public knowledge about hepatitis C as good or very good, but 80% as bad or very bad. Of the subjects 40% did not know how they had been infected; 37% considered blood products as their infection mode, but only 10% drug abuse. Almost all subjects knew that HCV cannot be transmitted via shaking hands, use of bathrooms, kisses or food (< 1 %, respectively). Surgery (17%) and the dentist (15%), however, were men-tioned relatively often as a major risk for infection. About 80% of subjects knew recent quantitative data on ALT and HCV-RNA, their genotype and the results of liver biopsy. Both mental and physical scores in the SF12 questionnaire were markedly reduced by about one standard deviation in subjects with HCV infection when compared with the general German population. Mental and physical scores deteriorated with increases in inflammatory and fibrosis scores. Subjects with negative HCV-RNA and normal ALT had the best quality of life, whereas subjects with high levels of HCV-RNA and ALT had the worst. Conclusions: The data show that the public opinion is wrong when pretending that hepatitis C today is just a disease of drug addicts. Our analysis demonstrates for the first time that many HCV-infected subjects in Germany have problems with their insurances and jobs. German subjects are well informed about their infection including genotype, liver histology, ALT and HCV-RNA; on the other hand, there are information deficits and fears concerning the mode of infection. The recent analysis clearly shows that HCV-infected subjects consider the public information about the HCV infection as catastrophically bad. The recent data in addition show that elimination of HCV decisively ameliorates quality of life, whereas mental and physical health get increasingly worse with progressive liver disease and unsuccessful antiviral therapies.