Quality of life of women living with hepatitis C
Article first published online: 20 NOV 2003
Journal of Gastroenterology and Hepatology
Volume 18, Issue 12, pages 1329–1331, December 2003
How to Cite
THEIN, H.-H., HABER, P. S. and DORE, G. J. (2003), Quality of life of women living with hepatitis C. Journal of Gastroenterology and Hepatology, 18: 1329–1331. doi: 10.1046/j.1440-1746.2003.03216.x
- Issue published online: 20 NOV 2003
- Article first published online: 20 NOV 2003
- Accepted for publication 4 May 2003.
See article in J. Gastroenterol. Hepatol. 2003; 18: 841–50
Health-related quality of life (HRQOL) is a measure of self-perceived physical health and well-being.1 Quality of life, in contrast, is a broader concept, encompassing not only health status, but also non-health-related aspects, such as environmental, economic, political, cultural, and spiritual characteristics that substantially affect the physical and psychological well-being of an individual.1–3
Understanding of the natural history of hepatitis C virus (HCV) infection has improved in recent years, but the impact of this disorder on quality of life remains unclear. Furthermore, research has generally focused on HRQOL in treatment settings,4–9 rather than quality of life and experiences in broader populations.
In Australia, an estimated 210 000 persons had been exposed to HCV and 160 000 had developed chronic hepatitis C by the end of 2001.10 Estimated annual incidence of HCV infection increased from 11 000 in 1997 to 16 000 in 2001.10 The male to female ratio of HCV notifications is around 1.7:1; however, more equal numbers have been reported in younger age groups.11
Although a small minority of people with chronic hepatitis C will develop advanced liver disease complications such as liver failure and hepatocellular carcinoma,12 morbidity related to impaired HRQOL would appear to be considerable.4–9,13–15 In Australia, this morbidity corresponds to an estimated 22 500 quality-adjusted life years lost during 2001, with 70% associated with early or non-progressive chronic hepatitis C.10
Studies of HCV infection have reported sex to be associated with disease course and treatment, with a possible lower risk of disease progression16–18 and a better treatment response among women.19,20 Several studies have examined the sex-specific impact of HCV on HRQOL.6,15,21–23 These studies have demonstrated reduced HRQOL among women compared with men, including both physical and mental components. However, study subjects have generally been drawn from treatment settings and therefore the findings may not reflect morbidity among the broader population of women with hepatitis C.
The Australian study by Gifford et al. in Issue 7 of the Journal is the first comprehensive investigation into quality of life and experiences of women living with hepatitis C.24 The findings from that study outline both considerable morbidity and poor health-care-related experiences among women with hepatitis C. More than half the women in the study reported ever experiencing symptoms associated with hepatitis C, with fatigue, nausea, and psychological or emotional problems being most frequently reported. The authors also found that as many as half the women perceived that they had received unsatisfactory medical care, and dissatisfaction was associated with shorter duration of consultation. The median duration of consultation was an alarming 6 min. Only half reported being given post-test information or counseling and one in three reported being given information about reproductive health. Fewer than one in five women reported having received pretest counseling.
The strength of the study of Gifford et al. is that it has elucidated the physical, mental, social, and environmental health burden associated with hepatitis C among a large and broadly representative group of women with hepatitis C. It is, however, difficult to assess the sex-specific magnitude of the impact of hepatitis C in this study population in the absence of comparative studies of men with hepatitis C or of women with other chronic illnesses. Women with chronic illness are reported to have more symptoms, poorer physical health, and later health-care use than men.25–27 Sex differences in perception of symptoms and how they are evaluated and acted upon has been suggested as the explanation for these findings.26,27 However, other studies have indicated that women do not report more physical symptoms than men with the same health conditions.28 Importantly, a complementary study of men and hepatitis C by the authors is underway. A further limitation of the study by Gifford et al. is the lack of biological specimen collection. An evaluation of the presence of HCV viremia among the women could have assisted with determining distinct viral and psychosocial components of quality-of-life impairment.
The study of Gifford et al. clearly demonstrated reduced HRQOL in women with hepatitis C. Based on the Short-Form-12 (SF-12) health survey questionnaire,29 HRQOL was lower compared with uninfected healthy Australian women. Women with hepatitis C scored lower on both physical and mental health compared with age-specific data from the Australian Bureau of Statistics National Mental Health and Well-being Profile for uninfected healthy women, and women with physical and/or mental conditions.30 These findings are similar to other studies where women with chronic hepatitis C were reported to have poorer Short Form-36 (SF-36) scores compared with uninfected healthy women6,15,22 or men.30,31 However, as important sociodemographic characteristics of the sample may differ from women in the normative sample, it is unclear whether the reduced HRQOL in women with hepatitis C is primarily a result of the HCV or if there is a major contribution from other factors. The inclusion of a large proportion of women with hepatitis C who currently inject drugs has improved the representativeness of the study population, but no analyses of HRQOL by injecting status were presented. Such analyses would help distinguish HRQOL impairment associated with hepatitis C and other comorbidities.
It is clear from the study of Gifford et al. that physical and psychosocial morbidity among women with hepatitis C are substantial and that unmet needs of quality health care must be addressed. However, further research is required in several areas. Comparative studies between experiences of women and men with chronic HCV infection are needed to provide important information for sex-based management strategies. The specific impact of viral infection on HRQOL could be explored through studies among people with hepatitis C antibodies who are unaware of their HCV RNA status. The influence of hepatitis C diagnosis, counseling, and the impact of other health-care-related experiences on HRQOL should be further explored. Finally, the impact on quality of life of specific interventions, both education- and counseling-based and therapeutic, should be examined in longitudinal studies.
- 10Modelling hepatitis C virus incidence, prevalence and long-term sequelae in Australia, 2001. Int. J. Epidemiol. 2003; in press., , et al.
- 11National Centre in, HIV, Epidemiology and Clinical Research (NCHECR). HIV/AIDS, viral hepatitis and sexually transmissible infections in Australia. Annual Surveillance Report 2001. Sydney: NCHECR; 2002.
- 20Randomised trial of interferon alpha2b plus ribavirin for 48 weeks or for 24 weeks versus interferon alpha2b plus placebo for 48 weeks for treatment of chronic infection with hepatitis C virus. International Hepatitis Interventional Therapy Group (IHIT). Lancet 1998; 352: 1426–32., , et al.
- 30Australian Bureau of Statistics (ABS). Mental Health and Well-Being Profile of Adults, Australia, 1997. Canberra: Australian Government Publishing Service, 1998.
- 31SF-36 Health Survey: Manual and Interpretation Guide. Boston, MA: The Health Institute, New England Medical Center, 2000., , , .