Exploring the Public Health and Social Implications of Future Curative Hepatitis B Interventions.

Hepatitis B is a significant global health issue where the 296 million people estimated to live with the infection risk liver disease or cancer without clinical intervention. The World Health Organization has committed to eliminating viral hepatitis as a public health threat by 2030, with future curative hepatitis B interventions potentially revolutionizing public health responses to hepatitis B, and being essential for viral hepatitis elimination. Understanding the social and public health implications of any cure is imperative for its successful implementation. This exploratory research, using semi-structured qualitative interviews with a broad range of professional stakeholders identifies the public health elements needed to ensure that a hepatitis B cure can be accessed by all people with hepatitis B. Issues highlighted by the experience of hepatitis C cure access include preparatory work to reorientate policy settings, develop resourcing options, and the appropriateness of health service delivery models. While the form and complexity of curative hepatitis B interventions are to be determined, addressing current disparities in cascade of care figures is imperative with implementation models needing to respond to the cultural contexts, social implications, and health needs of people with hepatitis B, with cure endpoints and discourse being contested.

Barriers and facilitators to HIV and syphilis rapid diagnostic testing in antenatal care settings in low-income and middle-income countries: a systematic review.

BACKGROUND: Testing and treatment during pregnancy is a well-established and cost-effective prevention strategy, which relies largely on use of rapid diagnostic tests (RDTs). Yet, in many low-income and-middle-income countries, the uptake of RDTs is suboptimal. A qualitative meta-synthesis was conducted to identify the barriers and enablers to use of HIV and syphilis RDTs among pregnant women in low-income and middle-income countries. METHODS: This review was conducted using PRISMA guidelines. Eligible studies included peer-reviewed publications, which used qualitative methods to explore HIV and syphilis RDT in antenatal care clinics in low-income and middle-income countries. Studies focusing on perspectives of pregnant women, healthcare workers and/or stakeholders were included. We used an inductive approach informed by a modified socioecological model to synthesise the data. RESULTS: 62 manuscripts met the eligibility criteria. For pregnant women, initial acceptance of the RDT and continuation in antenatal care depends on the perception that engaging in testing will be a beneficial experience for their baby and themselves, often influenced by the provision of services that are gender-sensitive, confidential, respectful, flexible and considers their well-being into the future. Local sociocultural beliefs about pregnancy and diseases, awareness of diseases and gender roles in society also influenced RDT acceptability among pregnant women. For healthcare workers, the ability to provide high-quality RDT care required ongoing training, accurate and easy to use tests, support from supervisors and communities, sufficient resources and staffing to provide services, and reliable salary. At the stakeholder level, well-developed guidelines and health system infrastructures were imperative to the delivery of RDT in antenatal clinics. CONCLUSION: Our findings highlight clear gaps to the provision of sustainable and culturally acceptable maternal HIV and/or syphilis screening using RDTs. In addition, greater attention needs to be paid to community stakeholders in promoting the uptake of RDT in antenatal clinics. PROSPERO REGISTRATION NUMBER: CRD42018112190.

Survey methods and characteristics of a sample of Aboriginal and Torres Strait Islander and non-Indigenous people who have recently used methamphetamine: the NIMAC survey.

INTRODUCTION AND AIMS: There is a need for detailed information on methamphetamine use in Aboriginal and Torres Strait Islander communities. We describe a national survey on methamphetamine use among Aboriginal and Torres Strait Islander people and non-Indigenous people. DESIGN AND METHODS: Participants aged 16 years or older who reported using methamphetamine in the past year were recruited for a cross-sectional survey through 10 Aboriginal Community Controlled Organisations. Surveys were completed anonymously on electronic tablets. Measures included the Australian Treatment Outcomes Profile, the Severity of Dependence Scale, subscales from Opiate Treatment Index and the Kessler 10. A Chronic Stress Scale was used to assess culturally situated chronic stress factors. RESULTS: Of the 734 participants, 416 (59%) were Aboriginal or Torres Strait Islander and 331 (45%) were female. In the previous year, most participants reported smoking (48.7%) or injecting (34%) methamphetamine and 17.4% reported daily use. Aboriginal and Torres Strait Islander people did not differ significantly from non-Indigenous participants on methamphetamine use patterns (age at first use, frequency of use, main mode of use, injecting risk, poly drug use). Aboriginal and Torres Strait Islander participants felt less able to access health care (32% vs. 48%, P < 0.001), including mental health services (19% vs. 29%, P < 0.002), were less likely to report a mental health diagnosis (50% vs. 60%, P < 0.002) and were more likely to turn to family for support (52% vs. 34%, P < 0.001). DISCUSSION AND CONCLUSIONS: We recruited and surveyed a large sample of Aboriginal and Torres Strait Islander people from which we can derive detailed comparative data on methamphetamine use and related health service needs for Aboriginal and Torres Strait Islander and non-Indigenous Australians.

'I didn't want to let it go too far.' The decisions and experiences of people who inject drugs who received a liver disease assessment as part of a liver health promotion campaign: The LiveRLife study.

BACKGROUND: An open cohort study (LiveRLife) evaluating an intervention integrating non-invasive liver disease assessment via transient elastography (TE) among people who inject drugs (PWID) was conducted in New South Wales, Australia. Participant follow-up occurred 2-16 weeks post-enrolment. It is imperative that PWID understand liver assessment results in order to make informed decisions about their health. The aim of this study was to evaluate the decisions and experiences of participants who received a liver disease assessment, including interpretation of TE score and subsequent health behaviours, using a health literacy framework. METHODS: Participants who had participated in LiveRLife were recruited from two opioid substitution treatment clinics and one medically supervised injecting centre between November 2015 and February 2016. The four recruitment categories were: (a) high TE score (≥9.5kPa)/attended follow-up, n=12; (b) high score/did not attend follow-up, n=2; (c) low score (<9.5kPa)/attended follow-up, n=11; and (d) low score/did not attend follow-up, n=8. Participants were not reminded of their category during recruitment. Inclusion criteria were: participants who received a TE score and informed consent. RESULTS: Of 33 semi-structured interviews, reasons for receiving a TE assessment were varied. Most participants interpreted level of liver disease correctly based on their TE score. Participants with higher TE scores frequently described feeling surprised by their result and also, often incorrectly identified drug use as a cause of advanced liver disease. In contrast, persons with lower TE scores felt encouraged by their result and spoke more to maintenance of healthy behaviours. When applicable, participants spoke of HCV therapy. CONCLUSION: Findings highlight some positive health changes made by PWID following liver disease assessment as well as ongoing misunderstandings of chronic liver disease in relation to illicit drug use. Results will inform strategies for targeted liver health education and 'linkage to care' for PWID with, and at-risk of, advanced liver disease.

Listening to the consumer voice: developing multilingual cancer information resources for people affected by liver cancer.

BACKGROUND: In Australia, liver cancer incidence is rising, particularly among people born in hepatitis B-endemic countries. We sought to build an understanding of the information needs of people affected by liver cancer, to inform the design of in-language consumer information resources. METHODS: We searched the World Wide Web for available in-language consumer information and conducted a literature search on consumers' information needs and their preferred means of accessing it. Qualitative data collection involved bilingual researchers conducting focus group discussions (26 participants) and in-depth interviews (22 participants) with people affected by liver cancer in English, Vietnamese, Cantonese and Mandarin. Sessions were audio-recorded, transcribed, translated and thematically analysed. The key themes and salient findings informed the development of in-language multimedia information resources. RESULTS: Many consumer resources did not cater for people with low literacy levels. The participants wanted more information on cancer diagnostic and treatment options, nutrition and Chinese Medicine and experienced communication challenges speaking to health professionals. While Vietnamese speakers relied entirely on information provided by their doctors, other participants actively searched for additional treatment information and commonly used the Internet to source it. We developed multilingual, multimedia consumer information resources addressing identified consumer information needs through an iterative process, in collaboration with our multilingual consumer panel. These resources are available in four languages, as separate modules accessible online and in DVD format. CONCLUSION: This process enabled the development of user-friendly patient resources, which complement health-care provider information and supports informed patient decision making.

"I Had a Little Bit of a Bloke Meltdown But the Next Day, I Was Up": Understanding Cancer Experiences Among Aboriginal Men.

BACKGROUND: Although cancer in indigenous populations is receiving increased research attention, there is a gap in understanding the particular experiences of Aboriginal men. OBJECTIVE: The aim of this study is to integrate a range of primary and secondary accounts of the experiences of Aboriginal men in engaging with a cancer diagnosis and treatment in Australia. METHODS: Secondary analysis of qualitative interviews (n = 54) conducted between 2008 and 2011 revealed recurrent themes regarding the cancer experiences of Aboriginal men in a subset of participant interviews (n = 23). The analysis reports themes that spanned the accounts of Aboriginal men with cancer (n = 6) and those of their carers (n = 12) and clinicians (n = 5). RESULTS: Recurrent beliefs about the cancer experiences of Aboriginal men included that they "avoid seeking help" for health matters, including cancer symptoms, and to "get on with it," "not talk about it," and "manage without fuss" after a cancer diagnosis. Although some men described having to "accept vulnerability," emphasis was placed on appreciating men's desire to "protect cultural roles" and "connect with family and culture" throughout care and treatment, including through humor. CONCLUSIONS: Men's accounts of the experiences of cancer diagnosis and care reveal more than simply individual challenge, extending to encompass the very real social and economic implications of illness and vulnerability for Aboriginal men today. IMPLICATIONS FOR PRACTICE: Aboriginal men could be better engaged with cancer diagnosis and treatment if greater attention was paid to recognizing preferred approaches, including pragmatism and humor, and supporting connections to family and culture throughout the cancer journey.

"I can't do this, it's too much": building social inclusion in cancer diagnosis and treatment experiences of Aboriginal people, their carers and health workers.

OBJECTIVES: Social inclusion theory has been used to understand how people at the margins of society engage with service provision. The aim of this paper was to explore the cancer care experiences of Aboriginal people in NSW using a social inclusion lens. METHODS: Qualitative interviews were conducted with 22 Aboriginal people with cancer, 18 carers of Aboriginal people and 16 health care workers. RESULTS: Participants' narratives described experiences that could be considered to be situational factors in social inclusion such as difficulties in managing the practical and logistic aspects of accessing cancer care. Three factors were identified as processes of social inclusion that tied these experiences together including socio-economic security, trust (or mistrust arising from historic and current experience of discrimination), and difficulties in knowing the system of cancer treatment. CONCLUSIONS: These three factors may act as barriers to the social inclusion of Aboriginal people in cancer treatment. This challenges the cancer care system to work to acknowledge these forces and create practical and symbolic responses, in partnership with Aboriginal people, communities and health organisations.

Health literacy in relation to cancer: addressing the silence about and absence of cancer discussion among Aboriginal people, communities and health services.

Cancer outcomes for Aboriginal Australians are poorer when compared with cancer outcomes for non-Aboriginal Australians despite overall improvements in cancer outcomes. One concept used to examine inequities in health outcomes between groups is health literacy. Recent research and advocacy have pointed to the importance of increasing health literacy as it relates to cancer among Aboriginal people. This study examined individual, social and cultural aspects of health literacy relevant to cancer among Aboriginal patients, carers and their health workers in New South Wales. Qualitative interviews were conducted with 22 Aboriginal people who had been diagnosed with cancer, 18 people who were carers of Aboriginal people with cancer and 16 healthcare workers (eight Aboriginal and eight non-Aboriginal health workers). Awareness, knowledge and experience of cancer were largely absent from people's lives and experiences until they were diagnosed, illustrating the need for cancer awareness raising among Aboriginal people, communities and services. Some beliefs about cancer (particularly equating cancer to death) differed from mainstream Western biomedical views of the body and cancer and this served to silence discussion on cancer. As such, these beliefs can be used to inform communication and help illuminate how beliefs can shape responses to cancer. Participants proposed some practical strategies that could work to fill absences in knowledge and build on beliefs about cancer. These results were characterised by a silence about cancer, an absence of discussions of cancer and an acknowledgement of an already full health agenda for Aboriginal communities. To promote health literacy in relation to cancer would require a multi-layered programme of work involving grass-roots community education, workers and Board members of Aboriginal community-controlled health organisations and speciality cancer services, with a particular focus on programmes to bridge community-based primary care and tertiary level cancer services.

One size fits all? The discursive framing of cultural difference in health professional accounts of providing cancer care to Aboriginal people.

OBJECTIVES: Cancer is the second biggest killer of Aboriginal Australians. For some cancers, the mortality rate is more than three times higher in Aboriginal people than for non-Aboriginal people. The Aboriginal Patterns of Cancer Care Study explored barriers to and facilitators of cancer diagnosis and treatment among Aboriginal and Torres Strait Islander people in New South Wales. DESIGN: Our team--which includes both Aboriginal and non-Aboriginal researchers--conducted in-depth interviews between 2009 and 2010 with Aboriginal people with cancer, their carers and health professionals who care for them. In this paper, we identify recurrent patterns of 'discursive framing' in the 16 interviews with health care professionals. We are particularly interested in how these frames assisted participants in constructing a professional position on what 'cultural difference' means for the design and delivery of cancer care services to Aboriginal people. RESULTS: Despite geographical, organisational, disciplinary and cultural diversity, these interview participants consistently drew upon six discursive frames, which we have interpreted as either eliding a discussion of difference ('everyone is the same' and 'everyone is different') or facilitating that discussion ('different priorities,' 'different practices' and 'making difference safe'). An additional strategy appeared to actively resist either of these positions but then tended to ultimately prioritise the eliding frames. CONCLUSIONS: While none of our participants were dismissive of the idea that cultural identity might matter to Aboriginal people, their reliance upon familiar narratives about what that means for cancer care services has the potential to both symbolically and practically exclude the voices of a group of people who may already feel disenfranchised from the mainstream health care system. Critically unpacking the 'taken for granted' assumptions behind how health care professionals make sense of cultural difference can enrich our understanding of and response to the care needs of indigenous people affected by cancer.

Perceptions of discriminatory treatment by staff as predictors of drug treatment completion: utility of a mixed methods approach.

INTRODUCTION AND AIMS: Staff interactions with their clients are an important factor in the quality of care that is provided to people in drug treatment. Yet there is very little research that addresses staff attitudes or clients' perceptions of discrimination and prejudice by staff with regard to treatment outcomes. This research aimed to assess whether perceptions of discrimination by staff predict drug treatment completion. DESIGN AND METHODS: The study used a mixed methods approach. Ninety-two clients in residential rehabilitation facilities in Sydney were administered a series of quantitative measures assessing drug history, severity of drug use, treatment history, perceptions of staff discrimination and treatment motivation. Clients were followed up regularly until an outcome (dropout or completion) was obtained for the full sample. RESULTS: Perceptions of discrimination were a significant predictor of treatment completion, with greater perceived discrimination associated with increased dropout. Qualitative interviews with 13 clients and eight health-care workers from these treatment services were then conducted to gain insight into how perceived discrimination may impact on treatment experiences. Clients and staff discussed how they would address the issue of perceived discrimination during the current treatment experience. DISCUSSION AND CONCLUSIONS: Adopting a mixed methods approach facilitated exploration of the impact of perceived discrimination on treatment from both clients' and health-care workers' perspectives. This methodology may also enhance interpretation and utilisation of these findings in drug treatment.

How can hepatitis C be prevented in the long term?

Significant advances have been made in preventing HIV infection among injectors but we still know little about preventing hepatitis C (HCV). Both prevalence and incidence of hepatitis C can remain high among IDUs even in the context of widespread implementation of harm reduction programmes. We need to develop new ways to fill the knowledge gap regarding HCV prevention. One way is to learn from the experts--those IDUs who, after long-term injection in social milieus of high hepatitis C prevalence, nonetheless remain uninfected. We describe a recently commenced program of research that focuses on understanding the strategies, behaviours, and environmental factors associated with "staying safe". This represents a 180-degree turn in IDU research where the focus has traditionally been on risk. Since social, cultural and environmental factors, as well as the vagaries of human strategic discovery by drug users can vary among localities, researchers in four different contexts--New York City, Valencia, Sydney and London--are collaborating in parallel Staying Safe studies. These studies aim to provide the conceptual basis for developing a new generation of HCV prevention programs to assist both new and experienced IDUs to remain uninfected over the long run.

The drugs that dare not speak their name: Injecting and other illicit drug use during treatment for hepatitis C infection.

Exploration of patients' illicit drug use during treatment for hepatitis C virus (HCV) infection is largely absent from the clinical literature. This paper explores injecting and other illicit drug use among people receiving interferon-based treatment for HCV infection, from the perspective of one group of health professionals. Data are presented from a qualitative study of six health professionals responsible for managing HCV treatment regimens at three major metropolitan hospitals across Sydney, Australia. During semi-structured in-depth interviews, participants discussed patients' use of injected and non-injected illicit drugs while coping with a demanding therapeutic regimen. Health professionals highlighted the socially conservative environment of healthcare and its negative perceptions of illicit drug users. Also discussed are the management of people who inject during treatment and the efficacy of cannabis to reduce side effects. The findings of this study indicate that while the health professionals adopted a harm reduction approach to patients' illicit drug use during HCV treatment, information regarding the risks and benefits of illicit drug use is silenced in this context. While ever prohibition remains Australia's illicit drug policy this situation appears unlikely to change. Research which investigates the extent of illicit drug use during HCV treatment, the risks and benefits associated with their use in this context, and the harms of perpetuating a duplicitous healthcare system is required.

Evaluation of a revised instrument to assess the needs of men diagnosed with prostate cancer.

BACKGROUND: This study was conducted to assess the face, content and construct validity and the internal validity of the revised version of an instrument to measure the perceived needs of men diagnosed with prostate cancer [Prostate Cancer Needs Questionnaire version 2 (PCNQv2)]. The PCNQ was constructed in two parts with Part 1 measuring needs at diagnosis and initial treatment and Part 2 measuring current needs. METHODS: A random sample of 650 men diagnosed with prostate cancer attending a Urologist of the Hunter Urology Group in Newcastle, New South Wales, Australia, were invited to participate in the study and sent by post the self-administered PCNQ. Information was provided on 145 men who were considered ineligible to participate. Completed questionnaires were received from 300 men. RESULTS: The principal components method of factor analysis with varimax orthogonal rotation identified eight factors with eigenvalues greater than 1, which together accounted for 68% of the variance in Part 1 of the PCNQ. Likewise, six factors were identified in Part 2 which accounted for 68% of the variance. Internal reliability coefficients (Cronbach's alpha) were adequate for identified factors with values ranging from 0.71 to 0.90 for Part 1, and from 0.80 to 0.92 for Part 2. CONCLUSIONS: These results support the validity and reliability of the PCNQv2 to assess the perceived needs experienced by men diagnosed with prostate cancer.

Knowledge and attitudes about treatment for hepatitis C virus infection and barriers to treatment among current injection drug users in Australia.

Despite recent improvements in outcomes of treatment for infection with hepatitis C virus (HCV), very few current injection drug users (IDUs) have access to treatment programs. We examined the natural history of and treatment knowledge about HCV infection and barriers and willingness to seek treatment for HCV infection. A convenience sample of current IDUs (n=100) with self-reported HCV-positive status drawn from a primary health facility and methadone clinic in inner Sydney completed an interviewer-administered questionnaire. Participants had a reasonable knowledge of the natural history of HCV infection but poorer knowledge of treatment for HCV infection. Most believed that being a current IDU was an exclusion criterion for treatment. Despite this, 70%-80% of IDUs reported that they would consider treatment under current scenarios in Australia: requirement for liver biopsy, subcutaneous injections, common adverse effects, and 40% efficacy. Study participants at the methadone clinic had higher levels of consideration of treatment. These findings support the development of specific education programs regarding treatment for HCV infection for current IDUs.

Evaluation of an instrument to assess the needs of men diagnosed with prostate carcinoma: an assessment of the validity and reliability of a self-administered questionnaire developed to measure the needs experienced by men diagnosed with prostate carcinoma.

BACKGROUND: This study was conducted to evaluate a self-administered questionnaire developed to measure the needs experienced by men diagnosed with prostate carcinoma (the Prostate Cancer Needs Questionnaire [PCNQv1.1]). The PCNQv1.1 was constructed in two parts. Part 1 measures the needs at diagnosis and initial treatment and Part 2 measures current needs. METHODS: A random sample of 650 men diagnosed with prostate carcinoma who were being treated by a urologist of the Hunter Urology Group in Newcastle, New South Wales, Australia, were invited to participate in the study. They were sent by post the self-administered PCNQv1.1. Completed questionnaires were received from 385 men. Information provided on 100 additional men was considered ineligible. RESULTS: The principal components method of factor analysis with varimax orthogonal rotation identified eight factors with eigenvalues greater than 1, which accounted for 61.7% of the variance in Part 1 of the PCNQv1.1. Likewise, six factors were identified in Part 2, which accounted for 63.5% of the variance. Internal reliability coefficients (Cronbach alpha) were adequate for identified factors with values ranging from 0.70 to 0.88 for Part 1 and from 0.71 to 0.87 for Part 2. Test-retest reliability was acceptable with intraclass correlation coefficients ranging from 0.61 to 0.78 for Part 1 and from 0.60 to 0.82 for Part 2. CONCLUSIONS: These results suggest that the PCNQv1.1 is a valid and reliable instrument to assess the needs experienced by men diagnosed with prostate carcinoma.