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.

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.

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.

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.

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.

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.

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.

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.

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.

Preventing primary liver cancer: how well are we faring towards a national hepatitis B strategy?

Worldwide, over 80% of primary liver cancers are attributable to chronic infection with hepatitis B or C virus. Over the past two decades, primary liver cancer incidence rates have been consistently rising in Australia. In New South Wales, the standardised incidence ratios for primary liver cancer in males born in Vietnam, Hong Kong and Macau, Korea, Indonesia and China and in females born in Vietnam and China are 6-12 times those in Australian-born populations. The incidence of liver cancer is likely to continue to increase unless a coordinated approach to disease control can be developed. Effective programs for chronic hepatitis B management need to link prevention, treatment and care, and enhance opportunities for research and surveillance activities. The evidence that suppression of hepatitis B virus replication could limit disease progression needs to inform the development of a public health response. Lessons learned in the development of the National Hepatitis C Strategy and the experience of international hepatitis B control programs need to inform this process.

Integrating complementary therapies into mainstream cancer care: which way forward?

Although viewed with scepticism by the medical and scientific community, complementary and alternative medicine (CAM) is being used by about 50% of Australians. Integrative medicine is a holistic approach to cancer care, with some CAM of proven effectiveness being used as adjuvants to conventional medical treatments. However, there is little evidence of a systematic process of evaluation or dialogue between mainstream cancer medicine and CAM providers in Australia. Collaboration, guidance and support for relevant research in this area are needed. The key elements of a process of furthering integrative medicine include improving knowledge about CAM; addressing uncertainties about CAM efficacy and safety; improving communication about CAM between medical practitioners and patients, and between medical practitioners and CAM practitioners; introducing regulatory frameworks and credentialing of CAM practitioners; and addressing ethical issues.

Surveillance for newly acquired hepatitis C in Australia.

BACKGROUND: The purpose of the present paper was to determine recent patterns of hepatitis C virus (HCV) transmission in Australia through a national system of enhanced surveillance of newly acquired hepatitis C. METHODS: Demographic, clinical, and risk behavior information on newly acquired hepatitis C cases from 1997 to 2000 was collected. Newly acquired hepatitis C included cases of HCV antibody sero-conversion within a 12 month period and acute clinical hepatitis C cases. RESULTS: Nine hundred and twelve cases of newly acquired hepatitis C were identified, representing 2.8% of all HCV notifications for this period. The majority of cases (72%) were diagnosed in people aged between 20 and 39 years. Injecting drug use was reported in the vast majority of cases (93%), with sexual transmission (2%) and tattooing (2%) reported in small numbers. HCV antibody sero-conversion was the mode of diagnosis in most cases (78%). CONCLUSIONS: Injecting drug use is the main route of HCV transmission in Australia. As only a small proportion of HCV infections are detected as newly acquired, enhanced surveillance procedures, including increased regular HCV testing of at-risk populations are required to more effectively monitor recent patterns of transmission.