Grant: Operating Grant

Cancer is the most common cause of disease-related death in adolescents and young adults (AYA). AYA cancer survival has not improved as much as in children and older adults, and AYA research and clinical programs are limited. To address this, we are creating a detailed database containing patient, treatment and outcome data for all Ontario AYA aged 15-21 years diagnosed with cancer between 1992-2011 using data from a pediatric cancer registry and chart reviews at adult centres. We will link these data to Ontario's healthcare databases to determine how AYA were diagnosed and treated, and if they survived. This unique data platform, which will be available to other researchers, will facilitate policy-relevant research that will impact AYA at all stages of the cancer journey. AYA can receive cancer therapy in a pediatric hospital, adult cancer centre or community hospital. We will investigate what determines where an AYA gets care, and if location of care impacts survival, clinical trial enrollment, receiving recommended follow-up, and accessing palliative care and survivor programs. The study questions will have direct relevance to AYA survival and quality of life, and will help determine where Canada's AYA with cancer are best treated. Addressing disparities in AYA care is a major focus of the Canadian Partnership Against Cancer. It has created provincial Regional Action Partnerships (RAPs) to improve AYA cancer care. Team members are provincial and national leaders in this process and our studies will provide them with critical data to inform and evaluate change. For example, if we show that AYA treated in pediatric centres have better survival for certain cancers, instituting policies for ensuring care in pediatric centres would be recommended. Our data platform is unique and will enhance meaningful research in this understudied group, create opportunities for AYA researchers across the country, and increase Canada's international profile in AYA cancer research.