Hepatitis Social Research

ARCSHS Viral Hepatitis Social Research conducts strategic social research to improve the quality of life of people living with chronic viral hepatitis.

Over 500 million people globally are estimated to be infected with chronic viral hepatitis with the majority living in the Asia Pacific region. Hepatitis B and hepatitis C cause significant global mortality and morbidity with approximately 1 million deaths each year attributable to these infections. Over 350,000 people are infected with chronic viral hepatitis in Australia with an increasing community and health burden related to the infection.

Despite effective prevention interventions, particularly with vaccination for hepatitis B, and an increasing range of treatment options for both hepatitis B and hepatitis C, the impact of chronic viral hepatitis and liver cancer on health systems in Australia and in the broader region will continue to increase unless effective strategic, coordinated and integrated public health responses are implemented within and across the region.

ARCSHS social research seeks to provide evidence to inform public policy, the health sector and the community as a whole to understand and respond effectively to the experiences of people who are living with hepatitis B and/or hepatitis C.

Chronic viral hepatitis has a disproportionate impact in Asia and Pacific. ARCSHS is supporting the development of collaborative partnerships that seek to reduce the impact of the virus within the region as a whole, and within specific countries.

The CHI Study

Stephen McNally, Marian Pitts, Jack Wallace, Anthony Smith, Jen Johnson and Andrew Larner

The CHI study is a national cohort study charting the impact of hepatitis C over time on people infected with hepatitis C. In the first research of its type, the study will document the changes in health and social wellbeing following a diagnosis of hepatitis C, and how people respond to these changes. CHI is a web-based study using self-administered questionnaires. At recruitment, participants are asked about their health and wellbeing, their social and economic circumstances, and their experience of diagnosis and (if relevant) treatment. CHI will collect information on all aspects of living with hepatitis C, including decisions about treatment and the management of treatment side effects, the use of complementary therapies, and the impact of hepatitis C on health, work, relationships and family situations. Follow-up will generally occur at six-monthly intervals or more frequently where people are undergoing pivotal experiences, such as coming to terms with a recent diagnosis or undergoing treatment.

Regulating Hepatitis C: Rights and Duties

Marian Pitts, Anthony Smith, Meredith Temple-Smith (University of Melbourne), Ian Malkin (University of Melbourne), Stephen McNally and Jack Wallace

The Regulating Hepatitis C: Rights and Duties project, funded by the Australian Health Ministers’ Advisory Council, is nearing completion with the development of its first report: Regulating Hepatitis C: Rights and Duties, Preventing Hepatitis C Transmission in Australian Adult Correctional Services. Australian governments, at the local, state/territory and national levels have regulations seeking to limit hepatitis C transmission. These regulations relate to criminal and civil law, health acts, standards of care, codes of conduct and legal agreements between governments and professional bodies. This study recognises the priority populations detailed in the National Hepatitis C Strategy with its focus on needle and syringe programs, and within correctional settings with a focus on Aboriginal and Torres Strait Islander people.

The data collection activity for the project was daunting as there are substantial numbers of regulatory instruments from each Australian jurisdiction affecting the transmission of hepatitis C through needle and syringe programs and adult correctional settings. Key informant interviews provided insight into the context for and success of the implementation of these regulations.

The project has developed an Australia-wide audit of all regulations, guidelines and codes of practice governing hepatitis C-risk practices. The study has identified where regulations are missing and where conflicts and inconsistencies exist between different regulations, and has proposed a model of regulation in which hepatitis C prevention interventions are best implemented.

Hepatitis B Patient and Clinical Practice Survey

Jack Wallace, Behzad Hajarizadeh and Jacqui Richmond

It is estimated that up to 200,000 people in Australia have chronic hepatitis B with more than half of these people born in the Asia-Pacific region. Other groups at greater risk of infection in Australia include people born in other highly endemic regions, Indigenous people, men who have sex with men, and people who inject drugs.

The hepatitis B virus is difficult to eradicate and the goals of pharmaceutical treatment are to permanently suppress replication of the virus, and to reduce the risk of progressing to advanced liver disease and developing complications such as cirrhosis, liver failure or liver cancer. Successful clinical management of chronic hepatitis B infection requires lifelong monitoring and for many people, pharmaceutical treatment. Up to one-third of people in Australia infected with the virus remain undiagnosed, and only a small proportion of people (approximately 2%) for whom clinical management is recommended access treatment services.

This project uses qualitative and quantitative methods and will be undertaken in three stages to identify potential and perceived barriers to effective hepatitis B clinical management from the perspective of people with chronic hepatitis B. This project seeks to determine barriers to optimal clinical management from the perspective of patients by:

  • Describing the patient’s experience of hepatitis B clinical management in the tertiary health clinics, including any discrepancy between the expectations and reality of the process
  • Investigating knowledge, attitudes and practices of people with hepatitis B to the clinical management of hepatitis B
  • Identifying broader social and psychological barriers to undertaking or maintaining clinical management including treatment
  • Seeking patients’ perspective and understanding of the referral processes and experiences with general practice
  • Identifying other issues affecting treatment or clinical management compliance

Connecting the Clinic to the Community: The Role of GPs and People with Chronic Hepatitis B

Jack Wallace, Behzad Hajarizadeh, Jacqui Richmond and Stephen McNally

While the National Hepatitis B Strategy 2010-2013 identifies a central role for general practice in managing chronic hepatitis B, there has been little focus on the constituent elements of this role, particularly when compared to the general practice role described for the management of hepatitis C or the human immunodeficiency virus (HIV). General practitioners (GPs) are often the first health professional consulted by people with chronic hepatitis B and play a central role in the clinical management of the infection. GPs are essential in ensuring that people with hepatitis B understand and can respond effectively to their infection.

This study conducted qualitative interviews with 26 GPs to identify their understanding of their role, and perspectives on the barriers and challenges to the effective diagnosis and management of chronic hepatitis B in general practice.

GP knowledge about chronic hepatitis B was identified as a key challenge for providing an effective clinical response. Almost all GPs identified a need for further education. Knowledge deficits related to the changes in specialist practices over the past decade as a result of a better understanding of the natural history of hepatitis B and improved treatment modalities. While few GPs provided information about the infection to patients that they had diagnosed, they identified that poor knowledge and a lack of understanding about the impact of infection affected adherence to clinical management such as regular monitoring and/or treatment.

There were significant challenges identified by GPs in screening and diagnosing patients with hepatitis B. Most GPs reported not using screening protocols or official guidelines to direct screening decisions, with several expressing a need for an inclusive consensus based screening protocol. Only a minority of GPs conducted a comprehensive pre-test and post-test discussion as a part of the diagnosis process.

There was diversity in the views of participants about the involvement of GPs in treating chronic hepatitis B. Most participants were willing to be involved in treatment with chronic hepatitis B, and several suggested that this model was inevitable given the limited resources and capacity of liver clinics. Some participants believed that while a specialist should initiate treatment, GPs could play a role in continuing treatment.

The findings of this study support the development and implementation of a range of interventions including:

  • Comprehensive and accessible education including screening, diagnosis and clinical management protocols particularly targeting GPs working with the communities most at risk of infection with chronic hepatitis B
  • Develop an evidence-based screening protocol in partnership with GPs, specialists and representatives of communities most affected by chronic hepatitis B with specific guidance addressing concerns of auditing by Medicare for the over-servicing of patients
  • A nationally consistent chronic hepatitis B pre- and post-test protocol that provides guidance to GPs and other health care workers about patient education and support
  • Develop a model of care for general practice that increases access to clinical management for people with chronic hepatitis B
  • Community development interventions and educational resources describing chronic hepatitis B and its impact targeting the communities most affected by the virus
  • A clearer articulation of the role of General Practitioners in future national strategic responses to chronic hepatitis B

A Situational Analysis of Public Health Responses to Chronic Hepatitis B in the Torres Strait

Jack Wallace, Marian Pitts, Stephen McNally, James Ward (Kirby Institute), Yoko Nakata (Thursday Island Primary Health Care Centre) and Patricia Fagan (Cairns Public Health Unit)

It has been estimated that Aboriginal and Torres Strait Islander peoples comprise 2% of the Australian population yet they constitute 16% of those in Australia infected with chronic hepatitis B. Chronic hepatitis B prevalence among Aboriginal and Torres Strait Islander people varies according to place of residence, with estimates ranging from 2% for urban Indigenous populations to 8% for rural Indigenous populations, with particular remote Aboriginal communities recording prevalence rates up to 26%. Aboriginal and Torres Strait Islanders are identified in the National Hepatitis B Strategy 2010-2013 as one of four priority populations, while hepatitis B is included within the Aboriginal and Torres Strait Islander Blood Borne Viruses and Sexually Transmissible Infections. This study is based on an assumption that access to effective clinical management will reduce the burden of chronic hepatitis B on individuals, communities and the health care system.

Health services in the Torres Strait are provided by Queensland Health through the Torres Strait and Northern Peninsula Area Health Service District. Twenty Primary Health Centres are located in the region, with primary health programs and administrative support provided by the Thursday Island Primary Health Care Centre. This infrastructure provides the basis of the response to chronic hepatitis B throughout the Torres Strait Islands and the Northern Peninsula. Semi-structured in-depth face to face or telephone interviews were undertaken with 61 people providing health services to the Torres Strait including health workers, registered nurses, general practitioners, and public health and clinical specialists. They reported:

  • significant gaps in knowledge about chronic hepatitis B among health service providers
  • people with chronic hepatitis B are identified through regular screening interventions but a lack of guidance or a model of care to guide an effective clinical response to chronic hepatitis B, in addition to a poor level of knowledge in the workforce, meant this screening had little impact
  • a recall system that effectively incorporates and provides direction in response to chronic hepatitis B is required for health service providers to respond to the clinical needs of people with chronic hepatitis B
  • while the health status of many people living in the Torres Strait was complex, established chronic disease and sexual health programs, while under-resourced compared to their needs, provided a programmatic basis for responding to the needs of people with chronic hepatitis B
  • the unsystematic vaccination of household or sexual contacts of people diagnosed with chronic hepatitis B

This report recommends establishing a team consisting of a clinical nurse consultant and health worker located at the Thursday Island Primary Health Care Centre. The role of this project will be to develop an agreed model of care or clinical pathway, provide education to people with chronic hepatitis B, health service providers and the community, and link mainland specialist services with primary health care services on the Torres Strait.

Dean’s Research Roundtable Funding – Development of Funding Proposals

Marian Pitts, Jack Wallace, Behzad Hajarizedah, Stephen McNally, Jen Johnson and Jacqui Richmond

This work involved the preparation and submission of two major funding applications in 2011/12. In 2010, ARCSHS applied for a NHMRC Centre of Excellence grant application to generate strategic resources to consolidate and further develop ARCSHS’ existing strengths in social research on sex, sexuality and sexual health. While the application was unsuccessful, it was well reviewed and it is proposed to substantially re-develop this application. The data gathered for the NHMRC Partnership Grant was used to inform the development of an application to the Australian Research Council Linkage Project, Building an Effective Public Health Response to Hepatitis B in Australia and Asia: Challenges and Solutions. The study aims to improve Australia’s response to chronic hepatitis B (CHB) by identifying if and how the understanding and responses of people with hepatitis B living in Australia are informed by their experience of hepatitis B in their countries of origin. The study consists of qualitative interviews with people with CHB born in China, Vietnam and the Philippines alongside a review and assessment of policy responses affecting CHB within these countries. The project will use these data to identify the essential components of an effective public health response to hepatitis B. In addition, the study will develop a web-based database to allow this policy and analysis to be used by public health practitioners, policymakers and researchers across Australia, and throughout the Asia Pacific region. The study will be conducted in partnership with healthcare workers, healthcare providers, and community-based organisations working in viral hepatitis and with people with CHB. It will draw on and strengthen links and expertise across government, clinical, research, industry and nongovernment sectors in Australia and in key Asian countries.

9 May 2012