Sozio-ökonomische Charakteristika, Lebensqualität und Wissensstand bei Patienten mit Hepatitis-C-Virusinfektion in Deutschland - Sozio-ökonomische Aspekte bei Hepatitis C

Zusammenfassung

Hintergrund: Über die sozio-ökonomischen Konsequenzen der chronischen Hepatitis C für die betroffenen Patienten in Deutschland ist bis heute wenig bekannt. Ziele und Methodik: Das vom Kompetenznetz Hepatitis geförderte Projekt der Deutschen Leberhilfe e. V. analysiert prospektiv erhobene Fragebogendaten zu Lebensqualität, Arbeits- und Berufswelt, Versicherungen und anderen sozio-ökonomischen Aspekten von Patienten mit HCV-Infektion. Der Fragebogen enthielt außerdem Fragen zum Informationsstand der Patienten über die Hepatitis C und über ihre persönliche Erkrankung. Von 1500 über Kliniken, Schwerpunktpraxen, Selbsthilfegruppen und Internet verteilte Fragebögen wurden 714 zurückgesandt und ausgewertet. Ergebnisse: Unter den 714 meist deutschstämmigen Patienten waren 56 % Frauen und 44 % Männer im Alter von 52 Jahren mit einer Erkrankungsdauer von 18 Jahren. Mehr als 60 % der unter 65-jährigen Patienten gingen keiner regulären Arbeit nach und 26 % bezogen bereits eine Rente. Nur 47 % hatten eine ausreichende Rentenversicherung, fast alle aber eine Krankenversicherung. Nur 12 % hatten eine Berufsunfähigkeitsversicherung; von denen, die eine solche beantragt hatten, wurde diese bei 29 % abgelehnt. Etwa 80 % der Patienten gaben Beeinträchtigungen ihres Lebens durch die Hepatitis C an. Nur 4 % der Betroffenen hielten den öffentlichen Informationsstand für gut oder sehr gut, fast 80 % hingegen für schlecht oder sehr schlecht. 40 % wussten nicht, wie sie sich infiziert hatten; 37 % gaben Blutprodukte als Infektionsweg an, nur 10 % einen Drogenkonsum. Fast alle Personen wussten, dass die HCV-Übertragung mittels Händeschütteln, Toilettenbenutzung, Küssen und Lebensmitteln nicht möglich ist (alle < 1 %). Operationen (17 %) und Zahnarzt (15 %) wurden hingegen relativ häufig als Übertragungswege genannt. Etwa 80 % der Patienten kannten ihre GPT- und HCV-RNA-Werte, den Genotypen und das Ergebnis der Leberbiopsie. Die psychischen und körperlichen Scores im SF12-Fragebogen waren bei den HCV-Infizierten um etwa eine Standardabweichung - und damit deutlich - im Vergleich zur Allgemeinbevölkerung reduziert. Die Lebensqualität wurde mit ansteigender Entzündung und Fibrose zunehmend schlechter. Personen mit negativer HCV-RNA und normaler GPT hatten den besten psychischen und körperlichen Zustand, Personen mit hoher RNA und GPT hingegen den schlechtesten. Schlussfolgerung: Die Daten zeigen, dass die Hepatitis C auch heute nicht exklusiv eine Erkrankung von Drogensüchtigen ist. Die deutschen Patienten sind über ihre Krankheit (Genotyp, Histologie, GPT, HCV-RNA) sehr gut unterrichtet, während auf der anderen Seite Ängste bezüglich der Übertragungswege bestehen. Unsere Daten dokumentieren erstmals Versicherungs- und Berufsprobleme der Patienten. Die Daten zeigen eindrucksvoll, wie katastrophal schlecht der Informationsstand der Öffentlichkeit in den Augen der Patienten ist. Zudem zeigen die Analysen, dass die erfolgreiche Viruselimination einen entscheidenden Einfluss auf die Lebensqualität hat, die ansonsten mit fortschreitender Erkrankung und nach erfolglosen Therapien immer schlechter wird.

Abstract

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 mentioned 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.

Schlüsselwörter

Hepatitis-C-Virus - Lebensqualität - Leberzirrhose - Leberbiopsie - Interferon - Ribavirin

Key words

Hepatitis C virus - quality-of-life - liver cirrhosis - liver biopsy - interferon - repairing

Literaturhinweise

• 1 , www.who.org
• 2 , www.cdc.org
• 3 , www.rki.de
• 4 Alter M J. Epidemiology of hepatitis C.  Hepatology. 1997;  26 62-65
• 5 Lauer G M, Walker B D. Hepatitis C virus infection.  N Engl J Med. 2001;  345 41-52
• 6 Davis G L, Balart L A, Schiff E R. et al . Assessing health-related quality of life in chronic hepatitis C using the Sickness Impact Profile.  Clin Ther. 1994;  16 334-343
• 7 Carithers R L, Sugano D, Bayliss M. Health assessment for chronic HCV: Results of HQL.  Dig Dis Sci. 1996;  41 75-80
• 8 Lee D H, Regenstein F G. Morbidity of chronic hepatitis C as seen in a tertiary medical center.  Dig Dis Sci. 1997;  42 186-191
• 9 Foster G R, Goldin R D, Thomas H C. Chronic hepatitis C infection causes a significant reduction in HRQOL in the absence of cirrhosis.  Hepatology. 1998;  27 209-212
• 10 Sladden T J, Hickey A R, Dunn T M. et al . Hepatitis C virus infection: impacts on behaviour and lifestyle.  Aust N Z J Public Health. 1998;  22 509-511
• 11 Neary M P, Cort S, Bayliss M S. et al . Sustained virologic response is associated with improved health-related quality of life in relapsed chronic hepatitis C patients.  Semin Liver Dis. 1999;  19 77-85
• 12 Ware J E, Bayliss M S, Mannocchia M, Davis L G. Health-related quality of life in chronic hepatitis C: impact of disease and treatment response.  Hepatology. 1999;  30 550-555
• 13 Davis G L, Balert L A, Schiff E R. et al . Assessing health-related Quality of life in chronic hepatitis C using the Sickness Impact Profile.  Clin Ther. 1994;  16 334-343
• 14 Bayliss M S, Gandek B, Bungay K M. et al . A questionnaire to assess the generic and disease-specific health outcomes of patients with chronic hepatitis C.  Qual Life Res. 1998;  7 39-55
• 15 Bonkovsky H L. Woolley JM and the Consensus Interferon Study Group . Reduction of health-related quality of life in chronic hepatitis C and improvement with interferon therapy.  Hepatology. 1999;  29 264-270
• 16 Rodger A L, Jolley D, Thompson S C. et al . The impact of diagnosis of hepatitis C virus on quality of life.  Hepatology. 1999;  30 1299-1301
• 17 McHutchison J G, Ware J E jr, Bayliss M S. et al . The effects of interferon alpha-2 b in combination with ribavirin on health related quality of life and work productivity.  Hepatology. 2001;  34 140-147
• 18 Bernstein D, Kleinman L, Barker C M. et al . Relationship of health-related quality of life to treatment adherence and sustained response in chronic hepatitis C patients.  Hepatology. 2002;  35 704-708
• 19 Fontana R J, Hussain K B, Schwartz S M. et al . Emotional distress in chronic hepatitis C patients not receiving antiviral therapy.  Hepatology. 2002;  36 401-407
• 20 Gallegos-Orozco J F, Fuentes A P, Argueta J G. et al . Health-related quality of life and depression in patients with chronic hepatitis C.  Arch Med Res. 2003;  34 124-129
• 21 Wright M, Forton D, Main J. et al. (on behalf of the UK Mild HCV Trial investigators) . Treatment of histologically mild hepatitis C virus infection with interferon and ribavirin: a multicentre randomized controlled trial.  J Viral Hepat. 2005;  12 58-66
• 22 Kraus M R, Schäfer A, Csef H. et al . Emotional state, coping styles, and somatic variables in patients with chronic hepatitis C.  Psychosomatics. 2000;  41 377-384
• 23 Häuser W, Zimmer C, Schiedermaier P. et al . Biopsychosocial predictors of health-related quality of life in patients with chronic hepatitis C.  Psychosom Med. 2004;  66 954-958
• 24 , www.kompetenznetz-hepatitis.de
• 25 Bullinger M, Kirchberger I. SF36-Fragebogen zum Gesundheitszustand. Göttingen; Hogrefe Verlag 1998
• 26 Hays R D, Cunningham W E, Sherbourne C D. et al . Health-related quality of life in patients with human immunodeficiency virus infection in the United States: results from the HIV Cost and Services Utilization Study.  Am J Med. 2000;  108 714-722
• 27 Remy A J, Daures J P, Tanguy G. et al . Measurement of the quality of life in chronic hepatitis C: validation of a general index and specific index.  Gastroenterol Clin Biol. 1999;  23 1296-1309
• 28 Juenger J, Schellberg D, Kraemer S. et al . Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables.  Heart. 2002;  87 235-241
• 29 Obhrai J, Hall Y, Anand B S. Assessment of fatigue and psychologic disturbances in patients with hepatitis C virus infection.  J Clin Gastroenterol. 2001;  32 413-417
• 30 Dalgard O, Egeland A, Skaug K. et al . Health-related quality of life in active injecting drug users with and without chronic hepatitis C virus infection.  Hepatology. 2004;  39 74-80
• 31 Wenger N K. Quality of life issues in hypertension: consequences of diagnosis and considerations in management.  Am Heart J. 1988;  116 628-632
• 32 Park C K, Park S Y, Kim E S. et al . Assessment of quality of life and associated factors in patients with chronic viral liver disease.  Taehan Kan Hakhoe Chi. 2003;  9 212-221
• 33 Cordoba J, Flavia M, Jacas C. et al . Quality of life and cognitive function in hepatitis C at different stages of liver disease.  J Hepatol. 2003;  39 231-238
• 34 Chong C A, Gulamhussein A, Heathcote E J. et al . Health-state utilities and quality of life in hepatitis C patients.  Am J Gastroenterol. 2003;  98 630-638
• 35 Goh J, Coughlan B, Quinn J. et al . Fatigue does not correlate with the degree of hepatitis or the presence of autoimmune disorders in chronic hepatitis C infection.  Eur J Gastroenterol Hepatol. 1999;  11 833-838
• 36 Dwight M M, Kowdley K V, Russo J E. et al . Depression, fatigue and functional disability in patients with chronic hepatitis C.  J Psychosom Res. 2000;  49 311-317
• 37 Hussain K B, Fontana R J, Moyer C A. et al . Comorbid illness is an important determinant of health-related quality of life in patients with chronic hepatitis C.  Am J Gastroenterol. 2001;  96 2734-2744
• 38 Zickmund S, Ho E Y, Masuda M. et al . „They treated me like a leper”. Stigmatization and the quality of life of patients with chronic hepatitis C.  J Gen Intern Med. 2003;  18 835-844
• 39 Sherman K E, Sherman S N, Chenier T. et al . Health values of patients with chronic hepatitis C infection.  Arch Intern Med. 2004;  164 2377-2382
• 40 Miller E R, Hiller J E, Shaw D R. Quality of life in HCV-infection: lack of association with ALT levels.  Aust N Z J Public Health. 2001;  25 355-361
• 41 Hogg R S, Craib K J, Pi D. et al . Health and socioeconomic status differences among antibody hepatitis C positive and negative transfusion recipients, 1986 - 1990.  Can J Public Health. 2003;  94 130-134
• 42 Hassoun Z, Willems B, Deslauriers J. et al . Assessment of fatigue in patients with chronic hepatitis C using the Fatigue Impact Scale.  Dig Dis Sci. 2002;  47 2674-2681
• 43 Glacken M, Coates V, Kernohan G. et al . The experience of fatigue for people living with hepatitis C.  J Clin Nurs. 2003;  12 244-252
• 44 Filippini D, Colombo F, Jann S. et al . Central nervous system involvement in patients with HCV-related cryoglobulinemia: literature review and a case report.  Reumatismo. 2002;  54 150-155
• 45 Dawson T M, Starkebaum G. Isolated central nervous system vasculitis associated with hepatitis C infection.  J Rheumatol. 1999;  26 2273-2276
• 46 Origgi L, Vanoli M, Carbone A. et al . Central nervous system involvement in patients with HCV-related cryoglobulinemia.  Am J Med Sci. 1998;  315 208-210
• 47 Hilsabeck R C, Perry W, Hassanein T I. Neuropsychological impairment in patients with chronic hepatitis C.  Hepatology. 2002;  35 440-446
• 48 Kramer L, Bauer E, Funk G. et al . Subclinical impairment of brain function in chronic hepatitis C infection.  J Hepatol. 2002;  3 349-354
• 49 Forton D M, Thomas H C, Murphy C A. et al . Hepatitis C and cognitive impairment in a cohort of patients with mild liver disease.  Hepatology. 2002;  35 433-439
• 50 Hilsabeck R C, Hassanein T I, Carlson M D. et al . Cognitive functioning and psychiatric symptomatology in patients with chronic hepatitis C.  J Int Neuropsychol Soc. 2003;  9 847-854
• 51 Weissenborn K, Krause J, Bokemeyer M. et al . Hepatitis C virus infection affects the brain-evidence from psychometric studies and magnetic resonance spectroscopy.  J Hepatol. 2004;  41 845-851
• 52 Morsica G, Bernardi M T, Novati R. et al . Detection of hepatitis C virus genomic sequences in the cerebrospinal fluid of HIV-infected patients.  J Med Virol. 1997;  5 252-254
• 53 Vargas H E, Laskus T, Radkowski M. et al . Detection of hepatitis C virus sequences in brain tissue obtained in recurrent hepatitis C after liver transplantation.  Liver Transpl. 2002;  8 1014-1019
• 54 Forton D M, Taylor-Robinson S D, Thomas H C. Cerebral dysfunction in chronic hepatitis C infection.  J Viral Hepat. 2003;  10 81-86
• 55 Singh N, Gayowski T, Wagener M M. et al . Quality of life, functional status, and depression in male liver transplant recipients with recurrent viral hepatitis C.  Transplantation. 1999;  67 69-72
• 56 Dickson R C, Wright R M, Bacchetta M D. et al . Quality of life of hepatitis B and C patients after liver transplantation.  Clin Transplant. 1997;  11 282-285
• 57 Bianchi G, Loguercio C, Sgarbi D. et al . Reduced quality of life in patients with chronic hepatitis C: effects of interferon treatment.  Dig Liver Dis. 2000;  32 398-405
• 58 Zidlar D, Franco-Bronson K, Buchler N. et al . Hepatitis C, Interferon Alfa, and depression.  Hepatology. 2000;  31 1207-1211
• 59 Bonaccorso S, Marino V, Puzella A. et al . Increased depressive ratings in patients with hepatitis C receiving interferon-alpha-based immunotherapy are related interferon-alpha induced changes in the serotonergic system.  J Clin Psychopharmacol. 2002;  22 86-90
• 60 Bonaccorso S, Marino V, Biondi M. et al . Depression induced by treatment with interferon-alpha in patients affected by hepatitis C virus.  J Aff Dis. 2002;  72 237-241
• 61 Kraus M R, Schäfer A, Faller H. et al . Psychiatric symptoms in patients with chronic hepatitis C receiving interferon alfa-2 b therapy.  J Clin Psychiatry. 2003;  6 708-714
• 62 Gohier B, Goeb J L, Rannou-Dubas K. et al . Hepatitis C, alpha interferon, anxiety and depression disorders: a prospective study of 71 patients.  World J Biol Psychiatry. 2003;  4 115-118
• 63 Horiwaka N, Yamazaki T, Izumi N. et al . Incidence and clinical course of major depression in patients with chronic hepatitis type C undergoing interferon-alpha therapy: a prospectie study.  Gen Hosp Psychiaty. 2003;  25 34-38
• 64 Hassanein T, Cooksley G, Sulkowski M. et al . The impact of peginterferon alfa-2 a plus ribavirin combination therapy on health-related quality of life in chronic hepatitis C.  J Hepatol. 2004;  40 675-681
• 65 Kraus M R, Schäfer A, Wißmann S. et al . Neurocognitive changes in patients with hepatitis C receiving interferon alfa-2 b and ribavirin.  Clin Pharmacol Ther. 2005;  77 90-100
• 66 Dieperink E, Ho S B, Thuras P. et al . A prospective study of neuropsychiatric symptoms associated with interferon-alpha-2 b and ribavirin therapy for patients with chronic hepatitis C.  Psychosomatics. 2003;  44 104-112
• 67 Poynard T, Marcellin P, Lee S S. Randomised trial of interferon alpha 2 b plus ribavirin for 48 weeks or for 24 weeks versus interferon alpha 2 b plus placebo for 48 weeks for treatment of chronic infection with hepatitis C virus.  Lancet. 1998;  352 1426-1432
• 68 Zeuzem S, Feinman S V, Rasenack J. et al . Peginterferon alfa-2 a in patients with chronic hepatitis C.  N Engl J Med. 2000;  343 1666-1672
• 69 Manns M P, McHutchison J G, Gordon S C. et al . Peginterferon alfa-2 b plus ribavirin compared with interferon alfa-2 b plus ribavirin for initial treatment of chronic hepatitis C: a randomised trial.  Lancet. 2001;  358 958-965
• 70 Fried M W, Shiffman M L, Reddy K R. et al . Peginterferon alfa-2 a plus ribavirin for chronic hepatitis C virus infection.  N Engl J Med. 2002;  347 975-982
• 71 Hadziyannis S J, Sette H Jr, Morgan T R. et al . PEGASYS International Study Group.Peginterferon-alpha2 a and ribavirin combination therapy in chronic hepatitis C: a randomized study of treatment duration and ribavirin dose.  Ann Intern Med. 2004;  140 346-355
• 72 Zeuzem S, Diago M, Gane E. et al . Peginterferon alfa-2 a (40 kilodaltons) and ribavirin in patients with chronic hepatitis C and normal aminotransferase levels.  Gastroenterology. 2004;  127 1724-1732
• 73 Kalyoncu O A, Tan D, Mirsal H. et al . Major depressive disorder with psychotic features induced by interferon-alpha treatment for hepatitis C in a polydrug abuser.  J Psychopharmacol. 2005;  19 102-105
• 74 Schäfer M, Schmidt F, Folwaczny C. et al . Adherence and mental side effects during hepatitis C treatment with interferon alfa and ribavirin in psychiatric risk groups.  Hepatology. 2003;  37 443-451
• 75 Marcellin P, Lau G K, Bonino F. et al . Peginterferon Alfa-2 a HBeAg-Negative Chronic Hepatitis B Study Group. Peginterferon alfa-2 a alone, lamivudine alone, and the two in combination in patients with HBeAg-negative chronic hepatitis B.  N Engl J Med. 2004;  351 1206-1217
• 76 Janssen H L, van Zonneveld M, Senturk H. et al . HBV 99- 01 Study Group; Rotterdam Foundation for Liver Research.Pegylated interferon alfa-2 b alone or in combination with lamivudine for HBeAg-positive chronic hepatitis B: a randomised trial.  Lancet. 2005;  365 123-129
• 77 Van Thiel D H, Friedlander L, Molloy P J. et al . Interferon alpha can be used successfully in patients with Hepatitis C virus positiv chronic hepatitis hwo have a psychiatric illness.  Eur J Gastroent Hepatol. 1995;  7 165-168
• 78 Malaguarnera M, Di Fazio I, Restuccia S. et al . Interferon alpha-induced depression in chronic hepatitis C patients: comparison between different types of interferon alpha.  Neuropsychobiology. 1998;  37 93-97
• 79 Maddrey W C. Safety of combination interferon alfa-2b/ribavirin therapy in chronic hepatitis C-relapsed and treatment-naive patients.  Semin Liver Dis. 1999;  19 67-75
• 80 Gohier B, Goeb J L, Rannou-Dubas K. et al . Hepatitis C, alpha interferon, anxiety and depression disorders: a prospective study of 71 patients.  World J Biol Psychiatry. 2003;  4 115-118
• 81 Horiwaka N, Yamazaki T, Izumi N. et al . Incidence and clinical course of major depression in patients with chronic hepatitis type C undergoing interferon-alpha therapy: a prospectie study.  Gen Hosp Psychiatry. 2003;  25 34-38
• 82 Tanaka Y, Nagaki M, Tomita E. et al . Psychoneurological symptoms during interferon therapy in patients with chronic hepatitis: prospective study on predictive use of Cornell Medical Index and electroencephalogram.  Liver Int. 2004;  24 407-412
• 83 Desmorat H, Combis J M, Pradat P. Assessment of quality of life in chronic hepatitis C: [effect of treatment].  Gastroenterol Clin Biol. 2003;  27 1084-1090
• 84 Coughlan B, Sheehan J, Hickey A. et al . Psychological well-being and quality of life in women with an iatrogenic hepatitis C virus infection.  Br J Health Psychol. 2002;  7 105-116