Doctor Joseph Doyle, Professor Margaret Hellard, Doctor Peter Higgs
The introduction of direct-acting antiviral treatment for hepatitis C virus has made the elimination of hepatitis C as a public health threat a possibility. The population-level benefits of direct-acting antiviral treatment have been widely explored. Modelling data suggests that upscaling treatment, particularly among people who inject drugs is cost effective, will reduce the liver disease related burden, prevalence and number of hepatitis C-related deaths. However, little is known about the personal or individual-level benefits of undertaking and completing direct-acting antiviral treatment.
This PhD seeks to understand the social and individual impact of direct-acting antiviral treatment and aims to;
Mixed methodology is used across a number of sub-studies to achieve the proposed aims.
Study 1: Exploring barriers to treatment initiation among people with a history of injecting drug use who have been offered treatment. An ethno-epidemiological qualitative study will be performed. Eligible participants are hepatitis C RNA positive and have been offered treatment but not yet began hepatitis C treatment. Semi-structured interviews are conducted with participants. Transcripts are transcribed verbatim and thematically analysed using both inductive and deductive coding (based on Levesque’s conceptual framework of access to healthcare)
Study 2: The direct-acting antiviral treatment experience among people who inject drugs. This is a longitudinal qualitative study. Participants are interviewed before, half way through and following direct-acting antiviral treatment. Participants are asked about treatment discussions, their attitudes towards and perceptions of treatment and reinfection and the impact of treatment on their lives. Interviews are recorded, transcribed and analysed thematically.
Study 3: Developing a scale to measure the impact of hepatitis C and DAA treatment on health, wellbeing and everyday life. The HIV Disability Questionnaire was selected for adaptation following literature review. The pilot version of the hepatitis C applicable scale will be produced through an iterative process of item generation and modification by academic/expert and community stakeholders.
Study 4: Patient reported outcomes following community based nurse-led DAA treatment of hepatitis C. Secondary data from the Treatment and Prevention study will be analysed. The Treatment and Prevention Study is a nurse-led clinical trial assessing the efficacy of treating people who inject drugs, living with hepatitis C with direct acting antivirals in community based setting. The Short Form-8 Survey is used to measure health related quality of life. The Personal Wellbeing Index is used to measure life satisfaction. Patient reported outcomes are collected at baseline, end of treatment (week 12), and every 12 weeks subsequently until week 84.
The significance of understanding personal-level benefits of new treatment is twofold. Firstly, if DAA treatment provides a broader social benefit, governments may be more inclined to make treatment available and accessible for all people with chronic infection. Secondly, understanding the treatment experience may inform treatment-uptake messaging, encouraging individuals with chronic hepatitis C infection to seek treatment.
All studies are underway. Interviewing is ongoing for study one (barrier to treatment). Analysis is underway for study 2 (treatment experience) and study 4 (patient reported outcome measures). Community and academic consultation is ongoing for study 3 (scale development).
2018 International Symposium on Hepatitis Care in Substance [poster walk presentation] - Past experiences with stigma shaping present perceptions of healthcare among people who inject drugs living with hepatitis C
2017 Harm Reduction International Conference [poster] - The association between hepatic fibrosis and quality of life in an Australian cohort of people who inject drugs living with hepatitis C virus
2017 Australasian Viral Hepatitis Elimination Conference [poster] - The impact of hepatitis C related uncertainty on self-reported stress in people who inject drugs living with hepatitis C
2017 International Symposium on Hepatitis Care in Substance [poster] - Experiences of uncertainty and stress following fibrosis assessment in people who inject drugs living with hepatitis C
Goutzamanis, S., Doyle, J., Thompson, A., Dietze, P., Hellard, M. and Higgs, P. (2018). Experiences of liver health related uncertainty and self-reported stress among people who inject drugs living with hepatitis C virus: a qualitative study. BMC Infectious Diseases, 18(1).
Goutzamanis, S., Doyle, J., Higgs, P. and Hellard, M. (2018). Improving hepatitis C direct-acting antiviral access and uptake: A role for patient-reported outcomes and lived experience. Journal of Viral Hepatitis, 26(2), pp.218-223.
For more information relating to this project, please contact Stelliana Goutzamanis: