By Rajah Supramaniam, Program Manager at the Research Division of the Cancer Council New South Wales.
COSA ASM: Cancer is the second most common cause of death for Aboriginal people, yet until very recently both state and national Aboriginal health plans and cancer plans did not acknowledge or address cancer as a health issue for Aboriginal people.
Data from the Australian Institute of Health and Welfare (AIHW) shows that the gap in cancer mortality between Aboriginal people and non-Aboriginal people has increased from a mortality rate ratio of 1.0 in 1998 to 1.3 in 2012.This increase was due to an overall decrease in mortality for the non-Aboriginal population, largely due to falls in lung cancer mortality, as well as increases in the number of Aboriginal deaths attributed to cancer.
Another AIHW report shows that Aboriginal people, over a five-year period, had 5535 fewer hospitalisations for their cancer compared with what would be expected for non-Aboriginal people with a similar mix of cancer types. The disparities in hospitalisations occurred across all age groups, but were most pronounced in those aged under 45 years and those aged 75 and older. Similarly Aboriginal people had fewer than expected hospitalisations for each of the most common cancers diagnosed except for lung, liver and cervical cancers.
In 2007, the Cancer Council NSW began the Aboriginal Patterns of Cancer Care (APOCC) project funded by an NHMRC Health Services Research grant. The aims of the APOCC project were to investigate why NSW Aboriginal people were 60% more likely to die from their cancer compared with non-Aboriginal people. A specific objective was to identify any differences in cancer treatment and survival for Aboriginal people in NSW compared with non-Aboriginal people.
We analysed NSW Central Cancer Registry records for all people diagnosed with cancer in 2001-2007, linked with all hospital inpatient and death records. We found that Aboriginal people were less likely to receive potentially curative surgery for cancers of the breast (30% less likely), prostate (40%) and lung (46%) compared with non-Aboriginal people. Aboriginal people, compared with non-Aboriginal people, were also at least 30% less likely to survive for five years after being diagnosed with cancers of the breast, lung, prostate or bowel.
We also found that at the time of diagnosis Aboriginal people with cancer, compared with non-Aboriginal people, were more likely to: be younger, live in rural and remote areas, have other chronic comorbid conditions, live in areas of higher socioeconomic disadvantage and have regional and distant spread of disease. However these demographic and clinical differences did not explain all of the observed differences in cancer treatment and survival for Aboriginal people compared with non-Aboriginal people.
We obtained more information about the experiences of Aboriginal people affected by cancer through semi-structured interviews with Aboriginal cancer survivors, their carers and health workers. This identified practical issues such as needing more accommodation, parking, transport and childcare near cancer centres that would make treatment more accessible. Participants also identified cultural barriers to care such as the need for more Aboriginal Health Workers in cancer centres and the need for more non-Aboriginal healthcare workers to be aware of cultural differences and the potential for these cultural differences to influence and enhance treatment practices and decisions.
To identify when an Aboriginal person’s cultural differences might influence treatment decisions we developed a psychometric scale that might predict when they may need more information and support during their cancer journey. Specifically we developed a simple three question scale measuring a person’s level of Aboriginal Community Engagement (ACE), a higher ACE score indicating that they felt more connected to an Aboriginal Community. Of the 102 Aboriginal cancer survivors who participated in this study, those who were less likely to recognise symptoms of cancer, those less likely to trust non-Aboriginal organisations and those more likely to see a GP in an Aboriginal Community Controlled Health Service before their diagnosis had higher ACE scores. The ACE score did not vary by demographic characteristics such as age, sex or place of residence. Whether a person went to a hospital before diagnosis or trusted non-Aboriginal people was also not associated with their ACE Score. Whilst these are promising results, more work is needed before we can confidently use the ACE scale to identify people who may require tailored information and support services.
- increasing the number of Aboriginal Health Workers working in cancer centres;
- ensuring that all health workers in cancer care have Aboriginal cultural awareness training;
- improving cancer awareness, particularly of common cancer symptoms, amongst Aboriginal communities;
- identifying and supporting those Aboriginal people who may need help in navigating the health system; and
- reducing practical barriers to accessing cancer treatment centres by increasing the availability of accommodation, parking, transport and childcare facilities.
For more information on the APOCC project as well as video stories of Aboriginal people about their cancer journeys please visit the Cancer Council NSW’s Aboriginal Web Portal at http://www.cancercouncil.com.au/aboriginalcancer/ or for cancer information and support call 13 11 20.
Figure 1: Cancer mortality for Aboriginal and non-Aboriginal people and Mortality Rate Ratio 1998 to 2012 (Source AIHW 2014)
Figure 2: Hospitalisations for cancer 2006-07 to 2010-11 for Aboriginal people and expected hospitalisations based on non-Aboriginal people with a similar mix of cancers by age group (source AIHW and Cancer Australia 2013)[hr] Mr Rajah Supramaniam is a Program Manager at the Research Division of the Cancer Council New South Wales. He has worked in cancer research for over 15 years and has published widely on survival and outcomes for people in NSW with cancer. Rajah’s particular interest is in improving the cancer experience and outcomes for Aboriginal people by translating research findings into policy and community knowledge. In 2007, he began working on the Aboriginal Patterns of Cancer Care Project (APOCC) as a chief investigator and project manager.
The APOCC project was a comprehensive mixed methods project investigating the reasons for the 60% higher cancer mortality for Aboriginal people in NSW. Complementing the scientific publications from the project the APOCC team created the first website specifically for Australian Aboriginal people affected by cancer.
Rajah recently presented at the COSA ASM in Hobart on ‘Closing the Gap in cancer outcomes for Indigenous people — Equalising outcomes by reducing inequities’.