Hepatitis B and Liver Cancer: Community Awareness, Knowledge and Beliefs of Middle Eastern Migrants in Sydney, Australia.

Chronic hepatitis B (CHB) is a significant global health challenge given an increasing morbidity and inadequate public health response, Migrant populations are primarily affected by CHB in industrialised countries, and while more than 7% of Australians with CHB were born in Africa or the Middle East, little is known of their awareness or knowledge of viral hepatitis and its impact. This qualitative study, using semi-structured interviews with Assyrian and Arabic community leaders and focus groups (FG) with 66 community members sought to identify hepatitis and liver cancer knowledge and awareness among local Arabic and Assyrian-speaking communities in Western Sydney. Interviews were thematically analysed, with findings framing the topics for the FGs which were analysed using a framework analysis. Themes identified across both methods included limited awareness or knowledge of viral hepatitis or liver cancer, stigma associated with both conditions, variable levels of health literacy and trust in medical practitioners, and fear that receiving "bad news" would deter people from seeking care. Preferred sources of health information were family doctors, family members, the internet and the ethnic media. The study gave valuable information for the design of an educational program and provided useful information for the planning of culturally appropriate hepatitis screening and treatment services for these communities.

Using a chronic hepatitis B Registry to support population-level liver cancer prevention in Sydney, Australia.

BACKGROUND: Approximately 1% of Australians have chronic hepatitis B (CHB), which disproportionately affects people born in hepatitis B-endemic countries. Currently, approximately half of the people affected remain undiagnosed and antiviral treatment uptake is suboptimal (~5%). This increases the likelihood of developing end-stage disease complications, particularly hepatocellular cancer (HCC), and largely accounts for the significant increases in HCC incidence and mortality in Australia over the last decades. As our previous economic modeling suggested that CHB screening and treatment is cost-effective, we tested the feasibility of a primary care-based model of CHB diagnosis and management to prevent HCC. MATERIALS AND METHODS: From 2009 to 2016, the B Positive program trialed a CHB screening and management program in an area of high disease prevalence in Sydney, Australia. Trained local primary care providers (general practitioners) screened and managed their CHB patients using a purpose-built CHB Registry and a risk stratification algorithm, which allocated patients to ongoing primary care-based management or specialist referral. RESULTS: The program enrolled and followed up >1,500 people (25% of the target population). Their median age was 48 years, with most participants being born in China (50%) or Vietnam (32%). The risk stratification algorithm allocated most Registry participants (n=847 or 79%) to primary care-based management, reducing unnecessary specialist referrals. The level of antiviral treatment uptake in Registry patients was 18%, which was the optimal level in this population group. CONCLUSION: This pilot program demonstrated that primary care-based hepatitis B diagnosis and management is acceptable to patients and their care providers and significantly increases compliance with treatment guidelines. This would suggest that scaling up access to hepatitis B treatment is achievable and can provide a means to operationalize a population-level approach to CHB management and liver cancer prevention.

Perceptions of cancer of unknown primary site: a national survey of Australian medical oncologists.

BACKGROUND: Despite being the sixth most common cause of cancer death in Australia, cancer of unknown primary (CUP) site remains poorly understood. AIMS: To describe practices relating to the diagnosis, investigation, classification, communication and management of CUP among medical oncologists. METHODS: We invited all members of the Medical Oncology Group of Australia to participate in a national, anonymous online survey about CUP. The survey collected data regarding diagnosis acceptance, diagnostic tests, treatment protocols and communication practices around the diagnosis of CUP. RESULTS: Three hundred and two oncologists were invited and 86 (28%) completed the survey. Eighty (93%) respondents were directly involved in the assessment of patients with CUP. Eighty-five (99%) respondents were prepared to make a diagnosis of CUP if, after appropriate diagnostic tests, the primary location could not be ascertained. Eighty-three percent would assign a primary site to obtain Pharmaceutical Benefits Schedule funding of medical therapy. Sixty-two percent did not have a specific treatment protocol designed for CUP. The majority of oncologists used serum tumour markers and computed tomography scans in the initial work-up, while 43% indicated they would use a positron emission tomography scan in the majority of cases. The majority would arrange mammography in female patients. Thematic analysis of responses to open-ended questions about how CUP is described identified little consistency in the language being used. CONCLUSION: The approach to diagnosis, investigation and management of CUP by medical oncologists in Australia is variable. Many preferred to estimate the primary site and treat accordingly. Pharmaceutical Benefits Schedule restrictions may encourage the practice of 'best guessing'.

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.

Using consensus methods to develop a country-specific Master of Public Health curriculum for the Republic of Maldives.

BACKGROUND: Over the last four decades, the health status of Maldivian people improved considerably, as reflected in child and maternal mortality indicators and the eradication or control of many communicable diseases. However, changing disease patterns are now undermining these successes, so the local public health practitioners need new skills to perform effectively in this changing environment. To address these needs, in 2013 the Faculty of Health Sciences of the Maldives National University developed the country's first Master of Public Health (MPH) program. METHODS: The process commenced with a wide scoping exercise and an analysis of the curricular structure of MPH programs of high-ranking universities. Thereafter, a stakeholder consultation using consensus methods reached agreement on overall course structure and the competencies required for local MPH graduates. Subsequently, a working group developed course descriptors and identified local public health research priorities, which could be addressed by MPH students. RESULTS: Ten semistructured interviews explored specific training needs of prospective MPH students, key public health competencies required by local employers and preferred MPH training models. The recommendations informed a nominal group meeting, where participants agreed on MPH core competencies, overall curricular structure and core subjects. The 17 public health electives put forward by the group were prioritized using an online Delphi process. Participants ranked them by their propensity to address local public health needs and the locally available teaching expertise. The first student cohort commenced their MPH studies in January 2014. CONCLUSION: Consensus methods allowed a broad stakeholder engagement with public health curriculum development and the creation of a country-specific curriculum, informed by local realities and needs.

Community-based hepatitis B screening: what works?

INTRODUCTION: Chronic hepatitis B (CHB) affects over 350 million people worldwide and can lead to life-threatening complications, including liver failure and hepatocellular cancer (HCC). Modern antiviral therapies could stem the rising tide of hepatitis B-related HCC, provided that individuals and populations at risk can be reliably identified through hepatitis B screening and appropriately linked to care. Opportunistic disease screening cannot deliver population-level outcomes, given the large number of undiagnosed people, but they may be achievable through well-organized and targeted community-based screening interventions. MATERIAL AND METHODS: This review summarizes the experience with community-based CHB screening programs published in the English-language literature over the last 30 years. RESULTS: They include experiences from Taiwan, the USA, The Netherlands, New Zealand, and Australia. Despite great variability in program setting and design, successful programs shared common features, including effective community engagement incorporating the target population's cultural values and the ability to provide low-cost or free access to care, including antiviral treatment. CONCLUSION: While many questions still remain about the best funding mechanisms to ensure program sustainability and what the most effective strategies are to ensure program reach, linkage to care, and access to treatment, the evidence suggests scope for cautious optimism. A number of successful, large-scale initiatives in the USA, Asia-Pacific, and Europe demonstrated the feasibility of community-based interventions in effectively screening large numbers of people with CHB. By providing an effective mechanism for community outreach, scaling up these interventions could deliver population-level outcomes in liver cancer prevention relevant for many countries with a large burden of disease.

Clinical Oncology Society of Australia position statement on the use of complementary and alternative medicine by cancer patients.

Health professionals involved in the clinical management of cancer are becoming increasingly aware that their patients use complementary and alternative medicine (CAM). As cancer incidence and survival rates increase, use of CAM is also likely to increase. This paper outlines the position of the Clinical Oncology Society of Australia (COSA) on the use of CAM by cancer patients and provides guidance for health professionals involved with the treatment of cancer patients who are using or wish to use CAM. Key definitions and common communication scenarios are presented along with evidence-based recommended steps for health professionals when discussing CAM use. COSA encourages health professionals to focus on open discussion with their patients regarding CAM, to become familiar with reputable resources for CAM information, to discuss with patients the concept of evidence-based medicine, to recognize limitations to their knowledge of CAM and seek further advice when necessary, and to be respectful of the patients' right to autonomy.

Community-based prevention of hepatitis-B-related liver cancer: Australian insights.

PROBLEM: Although most primary hepatocellular cancers (HCCs) are attributable to chronic viral hepatitis and largely preventable, such cancers remain a leading cause of cancer-related mortality wherever chronic hepatitis B is endemic. APPROACH: Many HCCs could be prevented by increasing awareness and knowledge of hepatitis B, optimizing the monitoring of chronic hepatitis B and using antiviral treatments - but there are gaps in the implementation of such strategies. LOCAL SETTING: The "B Positive" programme, based in Sydney, Australia, is designed to improve hepatitis-B-related health outcomes among immigrants from countries with endemic hepatitis B. The programme offers information about disease screening, vaccination and treatment options, as well as optimized access to care. RELEVANT CHANGES: The B Positive programme has been informed by economic modelling. The programme offers culturally tailored education on chronic hepatitis B to target communities and their health practitioners and regular follow-up through a population-based registry of cases. LESSONS LEARNT: As the costs of screening for chronic hepatitis B and follow-up are relatively low and less than one in every four cases may require antiviral drugs, optimizing access to treatment seems an appropriate and cost-effective management option. The identification and accurate staging of cases and the judicious use of antiviral medications are predicated upon an informed and educated health workforce. As establishing community trust is a lengthy process, delaying the implementation of programmes against chronic hepatitis B until antiviral drugs become cheaper is unwarranted.

Cancer incidence and mortality in people aged less than 75 years: changes in Australia over the period 1987-2007.

BACKGROUND: Australia has one of the highest rates of cancer incidence worldwide and, despite improving survival, cancer continues to be a major public health problem. Our aim was to provide simple summary measures of changes in cancer mortality and incidence in Australia so that progress and areas for improvement in cancer control can be identified. METHODS: We used national data on cancer deaths and newly registered cancer cases and compared expected and observed numbers of deaths and cases diagnosed in 2007. The expected numbers were obtained by applying 1987 age-sex specific rates (average of 1986-1988) directly to the 2007 population. The observed numbers of deaths and incident cases were calculated for 2007 (average of 2006-2008). We limited the analyses to people aged less than 75 years. RESULTS: There was a 28% fall in cancer mortality (7827 fewer deaths in 2007 vs. 1987) and a 21% increase in new cancer diagnoses (13,012 more diagnosed cases in 2007). The greatest reductions in deaths were for cancers of the lung in males (-2259), bowel (-1797), breast (-773) and stomach (-577). Other notable falls were for cancers of the prostate (-295), cervix (-242) and non-Hodgkin lymphoma (-240). Only small or no changes occurred in mortality for cancers of the lung (female only), pancreas, brain and related, oesophagus and thyroid, with an increase in liver cancer (267). Cancer types that showed the greatest increase in incident cases were cancers of the prostate (10,245), breast (2736), other cancers (1353), melanoma (1138) and thyroid (1107), while falls were seen for cancers of the lung (-1705), bladder (-1110) and unknown primary (-904). CONCLUSIONS: The reduction in mortality indicates that prevention strategies, improvements in cancer treatment, and screening programmes have made significant contributions to cancer control in Australia since 1987. The rise in incidence is partly due to diagnoses being brought forward by technological improvements and increased coverage of screening and early diagnostic testing.

Getting it right: the impact of a continuing medical education program on hepatitis B knowledge of Australian primary care providers.

INTRODUCTION: In Australia, chronic hepatitis B (CHB) disproportionately affects migrants born in hepatitis B endemic countries, but its detection and management in high risk populations remains suboptimal. We piloted a primary care based program for CHB detection and management in an area of high disease prevalence in Sydney, Australia. Prior to its launch, all local general practitioners were invited to take part in a continuing medical education (CME) program on hepatitis B diagnosis and management. MATERIAL AND METHODS: Preceding each CME activity, participants completed an anonymous survey recording demographic data and hepatitis B knowledge, confidence in CHB management, and preferred CME modalities. We compared knowledge scores of first-time and repeat attendees. RESULTS: Most participants (75%) were males, spoke more than one language with their patients (91%), self-identified as Asian-Australians (91%), and had graduated over 20 years previously (69%). The majority (97%) knew what patient groups require CHB and hepatocellular cancer screening, but fewer (42%-75%) answered hepatitis B management and vaccination questions correctly. Knowledge scores were not significantly improved by seminar attendance and the provision of hepatitis B resources. At baseline, participants were fairly confident about their ability to screen for CHB, provide vaccinations, and manage CHB. This did not change with repeat attendances, and did not correlate with survey outcomes. Large group CMEs were the preferred learning modality. DISCUSSION: Knowledge gaps in hepatitis B diagnosis and management translate into missed opportunities to screen for CHB, to vaccinate those susceptible, and to prevent disease complications. The results suggest that a range of innovative CME programs are required to update general practitioners on the modern management of CHB infection.

Cost of treating chronic hepatitis B: comparison of current treatment guidelines.

AIM: To compare program costs of chronic hepatitis B (CHB) screening and treatment using Australian and other published CHB treatment guidelines. METHODS: Economic modeling demonstrated that in Australia a strategy of hepatocellular cancer (HCC) prevention in patients with CHB is more cost-effective than current standard care, or HCC screening. Based upon this model, we developed the B positive program to optimize CHB management of Australians born in countries of high CHB prevalence. We estimated CHB program costs using the B positive program algorithm and compared them to estimated costs of using the CHB treatment guidelines published by the Asian-Pacific, American and European Associations for the Study of Liver Disease (APASL, AASLD, EASL) and those suggested by an independent United States hepatology panel. We used a Markov model that factored in the costs of CHB screening and treatment, individualized by viral load and alanine aminotransferase levels, and calculated the relative costs of program components. Costs were discounted by 5% and calculated in Australian dollars (AUD). RESULTS: Using the B positive algorithm, total program costs amount to 13,979,224 AUD, or 9634 AUD per patient. The least costly strategy is based upon using the AASLD guidelines, which would cost 34% less than our B positive algorithm. Using the EASL and the United States Expert Group guidelines would increase program costs by 46%. The largest expenditure relates to the cost of drug treatment (66.9% of total program costs). The contribution of CHB surveillance (20.2%) and HCC screening and surveillance (6.6%) is small--and together they represent only approximately a quarter of the total program costs. CONCLUSION: The significant cost variations in CHB screening and treatment using different guidelines are relevant for clinicians and policy makers involved in designing population-based disease control programs.

Hepatitis B prevention and control: Lessons from the East and the West.

Despite being ten times more common than HIV infection, viral hepatitis has so far not commanded the same public health response worldwide, so a global viral hepatitis treatment program is still a long way from becoming a reality. However, much progress has occurred over the last few decades, with the screening of blood products, sound infection control practices and the introduction of disposable needles and syringes leading to significant reductions in nosocomial hepatitis B transmission in the developed world and increasingly in other countries. The introduction of hepatitis B vaccination in the 1980s and its integration into the Expanded Immunization Program have led to substantial reductions in chronic hepatitis B infection rates in children and to millions of lives saved. The availability of effective antiviral treatment has revolutionized treatment prospects, although access to treatment remains a significant challenge for most developed countries and remains out of reach for developing nations. Some of these breakthroughs have occurred in Asian countries, others in the West, but their unifying features are innovative research, timely clinical translation and a commitment to apply their findings to improve the health of populations, not just individuals. This paper reviews some of the challenges and opportunities for hepatitis B control at the end of the first decade of the third millennium and argues for closer East - West collaborations, to bring in fresh perspectives, avoid duplications of effort and in order to help answer many of the remaining challenges in making hepatitis B history.

The Delphi process: a solution for reviewing novel grant applications.

INTRODUCTION: Traditional scientific review processes are not well suited for evaluating the merits of research in situations where the available scientific evidence is limited and if review panels have widely divergent opinions. This study tested whether a Delphi process is useful in grant selection. MATERIALS AND METHOD: A Delphi process prioritized novel research proposals in pancreatic cancer. Five reviewers holding similar grants overseas ranked research applications by scientific merit, innovativeness, and level of risk. RESULT: Three rounds of voting evaluated the best 10 applications received. In the first round of the Delphi process, scores ranged from 5.0 to 8.3. After the second round, the cumulative scores of the eight remaining applications ranged from 10 to 12.6. At the end of the third round, the final cumulative scores of the remaining six applications ranged from 13.6 to 18.2. The four highest ranking applications were recommended for funding, with agreement from reviewers. CONCLUSION: A modified Delphi process proved to be an efficient, transparent, and equitable method of reviewing novel grant applications in a specialized field of research, where no local expertise was available. This process may also be useful for other peer review processes, particularly where there is limited access to local experts.

Using a population-based approach to prevent hepatocellular cancer in New South Wales, Australia: effects on health services utilisation.

BACKGROUND: Australians born in countries where hepatitis B infection is endemic are 6-12 times more likely to develop hepatocellular cancer (HCC) than Australian-born individuals. However, a program of screening, surveillance and treatment of chronic hepatitis B (CHB) in high risk populations could significantly reduce disease progression and death related to end-stage liver disease and HCC. Consequently we are implementing the B Positive pilot project, aiming to optimise the management of CHB in at-risk populations in south-west Sydney. Program participants receive routine care, enhanced disease surveillance or specialist referral, according to their stage of CHB infection, level of viral load and extent of liver injury. In this paper we examine the program's potential impact on health services utilisation in the study area. METHODS: Estimated numbers of CHB infections were derived from Australian Bureau of Statistics data and applying estimates of HBV prevalence rates from migrants' countries of birth. These figures were entered into a Markov model of disease progression, constructing a hypothetical cohort of Asian-born adults with CHB infection. We calculated the number of participants in different CHB disease states and estimated the numbers of GP and specialist consultations and liver ultrasound examinations the cohort would require annually over the life of the program. RESULTS: Assuming a 25% participation rate among the 5,800 local residents estimated to have chronic hepatitis B infection, approximately 750 people would require routine follow up, 260 enhanced disease surveillance and 210 specialist care during the first year after recruitment is completed. This translates into 5 additional appointments per year for each local GP, 25 for each specialist and 420 additional liver ultrasound examinations. CONCLUSIONS: While the program will not greatly affect the volume of local GP consultations, it will lead to a significant increase in demand for specialist services. New models of CHB care may be required to aid program implementation and up scaling the program will need to factor in additional demands on health care utilisation in areas of high hepatitis B sero-prevalence.

Defining research priorities for pancreatic cancer in Australia: results of a consensus development process.

INTRODUCTION: Pancreatic cancer (PC) is the sixth leading cause of cancer death in Australia and the fourth in the United States, yet research in PC is lagging behind that in other cancers associated with a high disease burden. In the absence of agreed processes to reliably identify research areas which can deliver significant advances in PC research, the Cancer Council NSW established a strategic partnership with the NSW Pancreatic Cancer Network to define critical research issues and opportunities that could accelerate progress in this field in Australia. MATERIALS AND METHODS: The process consisted of five distinct stages: a literature review on recent progress in PC research, semi-structured expert interviews, a Delphi process, consumer focus groups, and a nominal group process. Information collected at each step informed the development of subsequent stages. RESULTS: The results from these steps were refined by the nominal group into a set of seven specific pancreatic cancer research goals. The goals were disseminated and led to a new funding scheme for key PC research priorities. DISCUSSION: This prioritisation exercise provided a much needed "road map" for research prioritisation in PC and served as a checklist to researchers applying for PC research grants to confirm how their research can contribute towards accelerating progress in PC research in Australia.

As the bell tolls: a foundation study on pancreatic cancer consumer's research priorities.

BACKGROUND: This is the first investigation of its kind to explore the views of people affected by pancreatic cancer with regard to research priorities. Pancreatic cancer has an extremely poor outlook in terms of early diagnosis, effective treatment and survival. Those affected by the disease generally lack opportunities to voice their needs or concerns in an organised manner, link with others affected by the condition and take part in research. METHODS: This qualitative study adopts a self-selected telephone focussed discussion group approach. Information was obtained from distinct carer and patient groups after adequate controls such as the 'safe space' technique (repeatedly enquiring on and respecting the emotional needs) were implemented to protect participants from undue physical and psychological distress. RESULTS: Five themes emerged overall, with three themes being common between the patients and carers groups. Early detection, clinician communication and public awareness were areas of recurring discussion and consensus for both groups. The fourth theme to emerge for the patient group centred on quality of care, while the fourth theme of the carer group focused on the need for more and improved treatment options. CONCLUSION: Research priorities for pancreatic cancer consumers have been identified via an investigation that was tailored to meet exceptional needs. This research gives us a primary understanding of the role that pancreatic cancer patients can play in identifying areas of research that are responsive to their needs and priorities when suitably planned. Importantly it also provides a much greater understanding of the grim realities of the disease for those affected. This work is likely to be of value to anyone planning to work with those with a time limited, challenging condition.

Antiviral therapy for hepatitis B-related liver cancer prevention is more cost-effective than cancer screening.

BACKGROUND/AIMS: In Australia, Asian-born populations are 6-12 times more likely to develop hepatocellular cancer (HCC) than Australian-born individuals. We therefore, modelled the consequences of different management strategies for chronic hepatitis B (CHB) in Asian-born adults aged > or = 35 years. METHODS: A Markov model compared (1) enhanced surveillance for HCC alone (HCC surveillance), or (2) enhanced HCC surveillance coupled with CHB treatment (HCC prevention) to the current practice, of low CHB treatment uptake. Patients were stratified and managed according to risk categories, based upon hepatitis B virus (HBV) viral load and alanine aminotransferase (ALT) levels. We measured costs, health outcomes [cases of HCC and deaths averted, quality-adjusted life-years (QALYs) gained] and incremental cost-effectiveness ratios (ICERs). RESULTS: HCC surveillance would cost on average AU$8479 per person, compared to AU$2632 with current clinical practice and result in a gain of 0.014 QALYs (AU$401,516/QALY gained). A HCC prevention strategy would cost on average AU$14,600 per person, result in 0.923 QALYs gained (AU$12,956/QALY gained), reduce cases of cirrhosis by 52%, HCC diagnoses by 47% and CHB-related deaths by 56%, compared to current practice. CONCLUSIONS: HCC prevention appears to be a cost-effective public health strategy in at-risk populations in Australia and is preferable to HCC surveillance as a cancer control strategy.

By invitation only - the case for breast cancer screening reminders for women over 69 years.

BACKGROUND: Breast cancer is the leading cause of cancer death in women in Australia. Early detection provides the best chance of reducing mortality and morbidity from the disease. Mammographic screening is a population health strategy for the early detection of breast cancer in Australia. Recruitment strategies such as regular advertising and biannual screening invitations are exclusively targeted at women aged 50 - 69 years. Even though they can participate, women 70 years or over are not invited or actively encouraged to undertake screening. Research has found that a routine letter of invitation increases the number of women participating in breast cancer screening. METHODS: Cancer data analysis and a literature and policy review was conducted to assess age specific breast cancer mortality rates and the legitimacy of rationale used to limit invitations for breast cancer screening to women younger than 70 years. RESULTS: The proportion of women over 69 years participating in the BreastScreen program is significantly less than rate of screening in the target age range (50-69 years). Evidence and data indicate that common justifications for limiting screening reminders to the target age range including life expectancy, comorbidities, effectiveness, treatment and cost are, for many women, unreasonable. CONCLUSION: There is now sufficient data to support a change in the targeted upper age range for breast cancer screening to improve the existing suboptimal surveillance in women aged over 69 years.