Table 4 Summary of findings from the biomedical and social literature on the ongoing clinical and psychosocial impacts of diagnoses with hepatitis C infection

Transmission

· Strongly associated with injection drug use – likely to occur early in injecting career.

· Maternal transmission associated with hepatitis C viraemia – more frequent in maternal HIV co-infection.

· Prisoner populations at enhanced risk for infection.

Natural history

· Chronic infection can progress to fibrotic changes and development of liver cirrhosis, development of hepatocellular carcinoma (HCC) and increased liver-specific mortality

· Complications of chronic infection predicted by persistent viraemia, moderate to high alcohol consumption and increasing age.

· Liver cirrhosis and HCC occur in persistently low serum alanine amino transaminase (ALT), but frequency and rate of disease progression low relative to consistently high serum ALT.

· Hepatitis B co-infection associated with greater incidence of HCC and lower survival than mono-infection with either virus.

· HIV-HCV co-infection found to accelerate progression to AIDS, end stage liver disease and liver-related death (mostly due to HCC).

Health related quality of life (QoL)

· Relatively consistent evidence of reduced QoL in untreated hepatitis C in most populations.

· Variation among studies about the relative impact of a range of co-factors on QoL, although disease activity found to be independent of QoL.

· Interferon-based treatments associated with further reductions in health related QoL, with depression playing a significant role.

· QoL improves post treatment – particularly if sustained viral responses achieved.

· QoL benefits of successful treatment can be sustained over time (possibly the deleterious effects).

Health outcomes after antiviral treatment or liver transplant

· In most populations, including IDUs, sustained viral responses attained from 20% to 80% depending on viral genotype (types other than 1 and 4 considered the most favourable).

· Sustained viral response associated with lower incidence of complications (e.g. HCC and death).

· Hepatitis C associated with lower survival and reduced overall health and function in organ transplant patients.

Psychosocial experience of living with hepatitis C infection

· Diagnosis with hepatitis C reported to have profound impacts on social function.

· Perceived stigma led to high levels of anxiety and over-inflated assessments of transmission risks.

· Fatigue the most common symptom reported, followed by depression and other mental health issues, and myalgia.

· Symptoms independent of disease activity or disease severity, but reported to be associated with depression, anxiety and other psychosocial factors with some biological mechanisms proposed.

Responses to diagnosis and management of hepatitis C

· Diagnosis with hepatitis C often reported to be a stressful event, potentially mediated by personal and social context.

· Perceived discrimination reported in multiple settings, including in interactions with health care services.

· Potentially a barrier to health service access and treatment

· Fear of side effects reported as a major influence on treatment decisions.