Aims:
  • To investigate the supportive care needs of adult Indigenous cancer patients in the course of their cancer journey (i.e. newly diagnosed and post-relapse)
  • To examine how Indigenous cancer patients' supportive care needs may change over time
  • To test the effectiveness of an intervention combining patient navigation, cancer education, and communication coaching to improve Indigenous cancer patients' experiences through their cancer journey and their cancer outcomes.
Summary:

Australian Indigenous people experience more aggressive cancers and a higher cancer mortality rate than their non-Indigenous counterparts. This poor prognosis and the unique barriers Indigenous patients face to access quality cancer treatment and care is likely to mean that Indigenous cancer patients are faced with specific and high levels of unmet supportive care needs.

This is the first comprehensive study of the supportive care needs of Indigenous cancer patients and explores the role of an 'Indigenous patient navigator' in meeting these needs.

Implications for policy and practice:

In the longer term this project will transfer knowledge about better coordination of care to policy and practice and will ultimately lead to improvements in the health of the increasing numbers of Indigenous Australians with cancer.

Our research has found:

This is the first study to provide comprehensive information on the type and prevalence of unmet supportive care needs (SCN) in Australian Indigenous cancer patients.

We included in the study over 250 Indigenous cancer patients from four hospitals in Queensland. Psychosocial and practical assistance were particularly important for Indigenous cancer survivors. The most commonly reported SCN items where patients reported ‘moderate-to-high need for help with’ included: ‘money worries’, 'worrying about the illness spreading’, ‘feeling down or sad’, ‘anxiety’, and ‘worry about results of treatment’.

We conducted three months follow-ups with over 200 of patients recruited, and six months follow-ups with about 160 patients. Preliminary analysis showed that at six months post-diagnosis 53% had at least one ‘moderate to high’ level unmet need, 33% reported ‘no need’ for help. The main reason for loss to follow-up being death.

We also worked collaboratively with Queensland Health to pilot the role of an Indigenous patient navigator in addressing the needs of Indigenous cancer patients receiving treatment at the Cairns Base Hospital. The navigator was widely accepted and welcomed, successfully assessed patients’ needs, and attempted to address them.

Understanding unmet needs is critical for planning supportive care that is responsive to the specific needs of Indigenous cancer survivors.

Chief investigators:
  • Associate Professor Patricia Valery
  • Dr Vanessa Beesley
  • Associate Professor Gail Garvey
  • Associate Professor Anna Hawkes
  • Associate Professor Jacinta Elston
Project manager:
  • Associate Professor Patricia Valery
Project dates:

This project commenced in 2010 and will conclude in 2014.

Funders:
  • National Health and Medical Research Council (NHMRC)
  • Cancer Australia - Supporting people with cancer grant.
 
  1. Whop, L.J., Valery, P.C., Beesley, V.L., Moore, S.P., Lokuge, K., Jacka, C., & Garvey, G. (2012). Navigating the cancer journey: A review of patient navigator programs for Indigenous cancer patients. Asia-Pacific Journal of Clinical Oncology, 8(4), e89–e96.
  2. Garvey, G., Beesley, V.L., Janda, M., Jacka, C., Green, A.C., O'Rourke, P., & Valery, P.C. (2012).The development of a supportive care needs assessment tool for Indigenous people with cancer. BMC Cancer, 12, 300.