Surveillance and survival among adolescents and young adults with cancer in Ontario, Canada

Gains in survival rates among adolescents and young adults (AYA) are reported from the USA to be lower than in both younger and older patients. Limiting factors include low accrual to clinical trials related to the type of institutional care. This study aimed to determine the incidence of cancer in the 15-29 age group in Ontario, and the 5-year survival of these cases by disease class, age at diagnosis group and highest level of institutional complexity of care. The primary data source was Cancer Care Ontario (CCO). Diseases were classified according to an AYA-specific system. Age at diagnosis was grouped as 15-19, 20-24 and 25-29 years; and institutional site of care was categorized as pediatric oncology group of Ontario (POGO) centers, regional cancer centers (RCC-tertiary care centers associated with CCO), RCC affiliate and satellite institutions and other institutions having no specialized cancer services. More than 10,000 incident cases were identified during 1990-2001. Carcinomas and lymphomas each accounted for > 20% of the total. Overall 5-year survival rate was 83%; significantly higher for lymphomas at POGO centers and RCC than elsewhere. About 40% of eligible AYA cases were treated at a POGO center and 25% of those were accrued to clinical trials. The low proportion of adolescents referred to pediatric cancer centers may result in a survival disadvantage for this group. All AYA, especially with lymphomas, should be referred to specialized centers. Accrual of AYA to clinical trials must be improved substantially.