Childhood, adolescent, and young adult cancer survivors research program of British Columbia: objectives, study design, and cohort characteristics.

BACKGROUND: The Childhood, Adolescent, and Young Adult Cancer Survivors Research Program (CAYACS) has been established in the province of British Columbia (BC), Canada, to carry out research into late effects and survivor care in multiple domains, and to inform policy and practice. PROCEDURE: This program identifies a survivor cohort and comparison groups from population-based registries and links their records to population-based files of outcomes and outcome determinants, to create a research database and conduct studies of long-term outcomes and care. RESULTS: The initial cohort consisted of all 5-year survivors of cancer or a tumor diagnosed under age 25 years from 1970 to 1995, who were residents in BC at the time of diagnosis, and followed till 2000 (3,841 subjects). Seven percent have died, and 77% have treatment information available. Data on death and second cancer occurring in BC are available. Late morbidity and healthcare utilization information is available for 68% of survivors (79% of those diagnosed from 1981). Education outcomes are available for 71% of those born during 1978-1995 and diagnosed under age 15 years. CONCLUSIONS: Use of registries, administrative databases, and record linkage methodologies is a cost-effective and comprehensive means to conduct survivorship research. This program should add to knowledge of risks of late effects and impacts on care, inform development of strategies to manage risks, evaluate the effects of surveillance and interventions, and assess new risks as the cohort ages, more recent survivors enter the cohort, and treatments change.

Educational outcomes among survivors of childhood cancer in British Columbia, Canada: report of the Childhood/Adolescent/Young Adult Cancer Survivors (CAYACS) Program.

BACKGROUND: Increased survival of patients with childhood cancer has resulted in a growing population of survivors within the education system, many of whom may experience educational difficulties. The current study provides a comprehensive assessment of survivors' educational achievements. METHODS: Seven hundred eighty-two childhood cancer survivors from the British Columbia (BC) Cancer Registry who attended BC schools from 1995 to 2004, were compared with a randomly selected comparison group of 8386 BC school children. Grade repetition, standard Foundation Skills Assessments (FSA), graduation-year examinations, and special education designations were compared, and factors that affected survivors' educational outcomes were identified. RESULTS: Survivors of central nervous system tumors had statistically significant FSA deficits in numeracy and reading (adjusted odds ratios from 0.2 to 0.5 in various grades); leukemia survivors also had lower FSA scores, although most differences were not statistically significant. Other survivors demonstrated no significant differences in FSA scores. Survivors were significantly more likely than controls to receive special education (32.5% vs 14.1%). Females and those who had received radiation treatment (particularly cranial radiation) were at increased risk for poor educational outcomes. CONCLUSIONS: The current results have implications for the management of survivors in the education system to maximize their educational experience.