CAYACS Program Overview

Rationale: Due to increasingly successful treatment of individuals diagnosed with cancer before age 25, a survivor population is emerging. By 2010, the prevalence of survivors diagnosed before age 20 is expected to be one in 250 young adults, 1% of the young adult work force. Incidence of cancer among 20-24 year olds is twice that for 0-19 year olds. Mainly due to treatment effects, a majority of these survivors are at risk for late and ongoing problems in multiple domains. These problems differ depending on whether the individual was diagnosed in childhood, adolescence, or young adulthood, and many are severe or life-threatening. However, at present, knowledge regarding lifetime impacts is incomplete. There is a need to ascertain the risks of late effects among survivors of cancer diagnosed before age 25, and determine resource needs in health, education, and other domains, in order to develop and evaluate strategies for long term management and support; educate both survivors and those that provide support on risks and management; and identify new problems as the survivors age and treatments change.

1. To identify a survivor cohort and a comparison group, and develop a database as an ongoing resource for surveillance and research into survivorship of this patient group;
2. To carry out a set of studies of treatment impacts including late health effects and educational effects;
   
3. To examine health care and resource issues, in particular health care utilization and continuity of care, relating to these late effects;
   
4. To build the capacity for collaborative research of survivorship issues;
   
5. To develop tools to translate and transfer research results to policymakers and care providers.

Significance: This research will address existing gaps in knowledge of risks and resource issues for this group. Research findings will be transferred to policymakers and care providers for development of long term strategies. Methodologies are innovative and cost-effective, and results will be comprehensive. These cohorts and databases can be maintained into the future to identify new risks, evaluate longer-term outcomes in these domains and to assess compliance with, and effectiveness of, strategies for long-term management of survivors. They will also serve as a surveillance and research resource for ongoing investigation of survivorship issues.

Principal Investigator

• Mary L McBride