Indigenous Australians unfortunately have poorer health on average, and have poorer access to health care than non-Indigenous Australians. The experiences of Indigenous Australians with prostate cancer are not well understood due to a lack of research in the past. The Australian Institute of Health and Welfare have recently released an important update on the rates of prostate cancer diagnoses and mortality for Indigenous Australians. This is an important starting point in the challenge to improve prostate cancer care for Indigenous Australians.
Aboriginal and Torres Strait Islanders (here described as Indigenous Australians) make up approximately 3% of our population. They live in a wide variety of territories and have varying traditions and cultures. There is no single Aboriginal culture or language. Each community has its own traditions, beliefs, relationship structures and language. Torres Strait Islanders are also a separate group with their own traditions, language and values. Over 200 languages have existed, with an estimated 120 in use today. Indigenous Australians are custodians of an invaluable resource of culture and tradition that has great importance for all humanity.
Unfortunately, Indigenous Australians suffer disadvantages in terms of health and access to health care. They have a lower life expectancy than non-Indigenous peoples and are more likely to suffer poor health. There are many possible reasons for this. One factor is that Indigenous Australians are more likely to live in remote locations than non-Indigenous people. The gap in health between Indigenous and non-Indigenous people is the subject of numerous interventions to try to improve the health of Indigenous Australians.
Until recently, there has been little research that has studied prostate cancer cases and mortality for Indigenous Australians. We also need to know more about the experiences of Indigenous men with prostate cancer. This lack of knowledge makes it difficult for health services to cater for any specific needs of Indigenous men with prostate cancer.
The first major study of the burden of cancer for Indigenous Australians was published in the journal Lancet Oncology in 2015. This study examined 24,815 cases of cancer in indigenous people and over 5 million cases in non-indigenous people from Australia, New Zealand, Canada and the US. Population-based cancer registries were used to estimates rates of cancer diagnoses in Australia and the other countries. Data were included from Australians living in Queensland, Northern Territory and Western Australia. Lung, colorectal and prostate cancer were some of the most common cancers in indigenous men from all four countries. Prostate cancer was the 2nd most common cancer diagnosis in Indigenous Australian men in Queensland, the 3rd most common in Western Australia and the 4th most common in the Northern Territory. The rate of cancer diagnoses (for any cancer) was similar or slightly lower for Indigenous Australians compared to non-Indigenous Australians. The prostate cancer diagnosis rates were consistently lower for indigenous men compared with non-indigenous men in Australia, New Zealand and the US, and most regions of Canada.
The Australian Institute for Health and Welfare released a report this March on the experiences of cancer for Aboriginal and Torres Strait Islanders. This report collated data from the past decade, tracking the diagnosis rates and outcomes from all cancers, including prostate cancer. The cancer diagnosis and survival data came from the states and territories where 90% of Indigenous Australians live (New South Wales, Victoria, Queensland, Western Australia and the Northern Territory). This report showed that Indigenous Australians diagnosed with any cancer had a much lower chance of surviving five years after diagnosis, compared to non-Indigenous peoples. Indigenous Australians were slightly more (1.1 times more) likely to be diagnosed with any cancer as non-Indigenous Australians. They were also 1.4 times as likely to die from cancer compared with non-Indigenous Australians. This is clearly a terrible gap in cancer care that needs to be addressed.
This Australian Government report also provided an important update on the rate of prostate cancer cases for Indigenous Australians. Between 2009-2013, 526 new cases of prostate cancer were diagnosed among Indigenous Australian men. Indigenous men had a lower chance of surviving for five years after prostate cancer diagnosis. Data from 2007-2014 showed that the 5-year survival rate for Indigenous Australians was 86%, compared to 92% for non-Indigenous peoples in that time-period. For non-Indigenous Australians, the mortality rate from prostate cancer has fallen over the past two decades. But no such trend was apparent for Indigenous Australians.
Put together, the data from the 2015 study and the 2018 Government report indicate that less Indigenous Australian men are being diagnosed with prostate cancer than non-Indigenous men, but they are more likely to die from the disease. We urgently need to know more about these issues. We need more research to understand why this is happening and what are the barriers to cancer care for these people.
The Australian Institute of Health and Welfare report suggests that these differences may be related to a range of factors that differ between Indigenous and non-Indigenous Australians. These include different rates of smoking, alcohol consumption, access to health-care services and uptake of screening and diagnostics testing. We know that Indigenous Australians are more likely to live in remote areas of Australia than non-Indigenous people, and the living in remote areas can reduce access to health services. People living in remote areas often have poorer health outcomes that people living in cities. From the data in the picture above, we can see that Indigenous men living in remote and very remote areas are considerably less likely to be diagnosed with prostate cancer than those living closer to major cities. An important, unanswered question is whether Indigenous men living in remote areas have prostate cancer that is going undiagnosed until too late.
Cultural, community and men's issues
What is missing from all these data and numbers is an understanding of the experiences of Indigenous Australian men with prostate cancer. This will be a key part of any intervention that tries to improve prostate cancer care for these men. Indigenous men will need to be engaged in these health care programs to ensure their success.
Dr Michael Adams, a senior researcher in Australian Indigenous health at Edith Cowan University, described the cultural issues surrounding prostate cancer in PCFA's 2015 monograph on prostate cancer health care programs for Indigenous Australians. Dr Adams is a descendent of the Yadhiagana/Wuthathi people of Cape York Peninsula in Queensland, having traditional family ties with the Gurindji people of Central Western Northern Territory with extended family relationships with the peoples of the Torres Strait Islanders, Warlpiri (Yuendumu), and East Arnhem Land (Gurrumaru) communities.
Dr Adams describes family structure as very important for Indigenous Australian communities. Specific relationships, such as an uncle-nephew relationship, are important for passing health information to men in the community. These structured relationships are an important part of the culture. Elders and older generations assume responsibility to care for younger people. Communication and support rely on strong bonds between people in the community.
Dr Adams describes Indigenous men as uncomfortable in discussing issues of sexual and reproductive health. Some community-based research has shown that Indigenous men are less likely to seek help for issues such as prostate cancer than non-Indigenous men. Testing for prostate problems was less frequent, despite similar levels of concerns. Feelings of shame, lack of awareness and culturally inappropriate services are possible barriers to these men seeking help. Indigenous man may be concerned that their confidentiality would be broken, particularly when discussing sexual issues. Another potential problem is the predominance of female health professionals- these men often prefer to talk to a male about such personal issues. There are many challenging barriers to the best care for Indigenous men with prostate cancer.
PCFA has designed resources specifically for informing Indigenous Australians about prostate cancer. We produce a series of three flip charts to provide information specifically to Indigenous men in a culturally appropriate manner. PCFA has worked with Aboriginal and Torres Strait Islander communities and specialist workers to develop resources for this community. PCFA aims to ensure that evidence-based, culturally appropriate, and easily accessible prostate cancer information and support is available to all Australians.
The three flipcharts have been designed to assist in discussions on the following topics:
- Know about your prostate - prevention and living well
- Diagnosis, treatment options and challenges - prostate cancer
- Support and care - what carers and partners of men with prostate cancer need to know
Health professionals can order copies of the flipcharts, by contacting us on 1800 22 00 99 or enquiries@pcfa.org.au.
