Achieving a hepatitis C cure: a qualitative exploration of the experiences and meanings of achieving a hepatitis C cure using the direct acting antivirals in Australia

Abstract

BackgroundUniversal access to the hepatitis C direct acting antiviral (DAAs) regimens presents a unique opportunity to eliminate hepatitis C in Australia. Large numbers of Australians have already been cured using these treatments, however, the numbers presenting for treatment have begun to plateau. This study explored how people experienced and understood being cured of hepatitis C, with the aim of informing interventions to increase uptake of DAA treatment among people with hepatitis C.MethodsThis qualitative study used semi-structured interviews to explore the experiences of people with hepatitis C taking DAAs accessing both hospital and community clinics. Interviews were conducted 12 weeks after treatment completion. Participants were asked to reflect on their experience of living with hepatitis C, their reasons for seeking treatment, and their experience of, DAA treatments. Participants were also asked to reflect on the meaning of being cured, and how they shared this experience with their peers. Interviews were transcribed verbatim and key themes were identified using inductive thematic analysis.ResultsTwenty participants were interviewed. While participants described a range of physical health benefits of achieving a hepatitis C cure it was an improved sense of psychological wellbeing that had the most significant impact on participants’ lives. The majority described their relief about no longer living with the burden of an uncertain future due to anxiety about developing liver disease or cancer, as well as fear of infecting others. Participants who had a past history of injecting drug use, described being cured as a way to break the connection with their past. Participants who were current injectors raised concerns about re-infection.ConclusionFeeling “normal” and not infectious allows people to live with reduced psychological distress, in addition to the physical benefits of no longer being at risk of developing serious liver disease. Future engagement strategies targeting people who are not accessing hepatitis health care need to promote the lived experience of being cured and the substantial psychological, and physical health benefits, offered by achieving a cure. Interventions aimed at people who are currently injecting also need to highlight the availability of re-treatment in conjunction with primary prevention strategies.

Categorization and Characterization of Activities Designed to Help Health-care Professionals Involved in Hepatitis Care Increase Their Awareness of the Disease: The Classification of Hepatitis Medical Care Coordinators

“…In Japan, significant progress has been made with regard to measures against hepatitis, including legislation efforts. However, according to international reports, access to appropriate antiviral therapy after infection remains a concern (35,36). To overcome these issues, multidisciplinary efforts including the involvement of hepatitis medical coordinators will be more effective than those of physicians on their own, and this study proposed valuable information that will aid in the recognition of and response to these challenges.…”

A qualitative study of perceived barriers to hepatitis C care among people who did not attend appointments in the non-urban U.S. South

“…At a policy level, our state does not have sobriety restrictions related to treatment access, though restrictions remain elsewhere in the country (37). Among people who use drugs, HCV treatment can be a motivating factor to reduce substance use and/or to participate in harm reduction activities (38,39). For one participant, substance use was his main source of connection to healthcare systems.…”

“…To reach these patients, it may be helpful to highlight improvements in patient related outcomes with HCV cure (3). The most signi cant impact of HCV cure may be an improved sense of psychological wellbeing related to relief about no longer living with the burden of an uncertain future or the fear of transmitting the infection to others (39). Addressing the uncertainty of living with HCV and the potential to alleviate this uncertainty through treatment may be a strategy to address ambivalence.…”

Improving hepatitis C direct‐acting antiviral access and uptake: A role for patient‐reported outcomes and lived experience

“…77 A recent study exploring how individuals treated with DAAs conceptualize being cured described that whilst some participants experienced physical improvements in health following treatment, improvements in psychological wellbeing had the greatest impacts on participants' lives. 78 Particularly powerful for participants was the reduction in uncertainty and fear of onward transmission. 78 These studies, highlight the need to conceptualize and measure treatment benefit beyond clinical outcomes alone.…”

“…78 Particularly powerful for participants was the reduction in uncertainty and fear of onward transmission. 78 These studies, highlight the need to conceptualize and measure treatment benefit beyond clinical outcomes alone. This disconnect between the concepts currently measured by patient-reported outcomes and those reported in qualitative studies calls for more sensitive and hepatitis C specific outcome measures.…”