[Changes in socio-economics, quality of life and knowledge of patients with chronic hepatitis C during the Hepatitis Competence Net Project]. / Entwicklung von sozioökonomischen Charakteristika, Lebensqualität und Wissensstand bei Patienten mit Hepatitis C während des Projektes Kompetenznetz Hepatitis.

AIMS AND METHODS: The study of the Patient Support Group Deutsche Leberhilfe e.V. and the Federal Hepatitis Competence Net prospectively analysed questionnaires about quality of life (SF12) and socio-economical data of patients with chronic hepatitis C (CHC). A 1st questionnaire 3 1/2 years ago gathered information in 714 CHC patients all of whom now received a 2nd questionnaire which was sent back by 503 subjects (71%). RESULTS: Both mental and physical SF 12 scores remained markedly decreased compared with scores for the general population which approximate 50 points (p<0.001). When compared to values obtained 3S years ago, mental scores increased from 41.2 to 42.5 and physical scores from 41.9 to 42.9 (changes not significant by analysis of variance; p>0.05). However, in patients with negative HCV-RNA, physical and mental scores significantly increased by 6.9 and 4.0 points (p<0.01). In contrast, mental and physical scores decreased by 2.4 and 2.5 points during follow-up in patients with fibrosis (Metavir F2-4) (p<0.05). SF 12-scores closely correlated with degrees of inflammation and fibrosis (p<0.001, respectively). Quality of life was associated with socio-economical data and gradually increased with higher school graduation. A high percentage of patients with CHC were unemployed (18%); of patients aged 65 years, 25% were already retired; 60% of the retired subjects received a disability pension, 37% because of CHC. Unemployed patients had lower SF 12 scores than patients with a job. Subjects with public employers had significantly lower SF 12 scores than privately or self-employed subjects. Complications of CHC markedly reduced SF 12 scores. Just 37% of subjects had a life insurance and only 9% had an insurance of occupational invalidity (values 2-3-times lower than those in the general German population). Insurance applications for life and occupational invalidity had been denied in 17 and 53%, respectively; the denial values were even higher than in the 1st questionnaire. CONCLUSIONS: The prospective follow-up shows that quality of life continuously improves after elimination of HCV, whereas mental and physical health get increasingly worse with ongoing fibrosis. The analysis demonstrates that many CHC subjects have severe socio-economical problems leading to unemployment, early retirement and lack of appropriate insurances. These problems further reduce the quality of life in CHC.