This project aims to improve outcomes of care for adolescents and young adults (AYAs) with cancer by providing information about the best way to organise health services.
There is increasing concern that outcomes for adolescents and young adult (AYA) patients with cancer are not optimal. Data from the United States and Europe show that (for all cancers combined) AYA patients have had the smallest improvement in survival over the last 20 years of any age group. In addition, for specific cancers that occur in both children and AYA patients, survival is worse among AYA patients.
Work by Coory and colleagues showed that 5-year survival in Australia from acute lymphoblastic leukaemia (ALL) was 85 percent in children (0-14 years), but only 50 percent in adolescents (15-19 years). Other analyses show that 5-year survival for soft tissue sarcomas in Australia is 70 percent in children, but only 55 percent in adolescents. Similar differentials have been reported for other cancers (e.g. brain, bone) and from other countries; and are not well understood. Suggested reasons include, more biologically aggressive cancers, diagnostic delay, dilution of expertise across multiple institutions, variable referral pathways, low enrolment in clinical trials and poor treatment adherence.
In 2012, the Federal Government funded the Coory project, to comprehensively describe patterns of care for AYAs in Queensland, New South Wales and Victoria. However, a small additional injection of funding would extend the data collection Australia-wide. Such data are needed because patterns of care for AYAs have not been comprehensively described in this country. Comparisons of survival by treatment setting will inform questions about whether the survival gain per health dollar spent can be improved by optimising the organisation of health services (e.g., by centralising care for some types of cancer).