Clinical review of the impacts of hepatitis C

7. Terms of Reference of the Clinical Review of the Impacts of Hepatitis C Group

The following terms of reference were agreed by the group members and by the Scottish Government.

To inform decision making around the potential award of payments to i) individuals who have ever been infected with chronic hepatitis C as a result of NHS blood, tissue or blood products, but who have not progressed to advanced disease, or ii) their widows, widowers or partners. (Note: people who have cirrhosis, hepatocellular carcinoma or B cell non-Hodgkins lymphoma or have had or are on the waiting list for a liver transplant are otherwise known as ‘advanced’ HCV individuals and those who have not are otherwise known as ‘chronic’ HCV individuals):

• 1. Characterise members of the Scottish Infected Blood Support Scheme in terms of their age, gender, blood transfusion/blood factor source of infection, antiviral treatment history and infection status in particular.
• 2. Assess the impact of chronic hepatitis C virus infection, and associated antiviral treatment, on the health, wellbeing and quality of life of people who have not progressed to advanced HCV disease.
• 3. Assess the impact of chronic hepatitis C virus infection, and associated antiviral therapy, on death among people who did not progress to advanced HCV disease and have died (including those whose death has been attributed (directly or indirectly) on the death certificate to hepatitis C).
• 4. Provide a view on i) the challenges of assessing the extent of the hepatitis C infection impact at an individual level, ii) whether or not such an assessment should be undertaken and, if so, iii) what would be the optimal approach to such an assessment.
• 5. Provide a view on the relativity of the hepatitis C infection impacts among chronic HCV and advanced HCV individuals.