Childhood, adolescent, and young adult cancer survivors (CAYACS) research program of British Columbia: Data linkage: Results to date

9555 Background: Long-term survivors of childhood and adolescent cancers are at risk for late mortality and morbidity. Using database linkages we assessed the extent of these issues and health care utilization in a population based cohort in British Columbia. Methods: Retrospective cohorts of 3,483 survivors (>5 years from diagnosis), and representative comparison groups, have been identified from population-based registries. Linkages were made with administrative databases of risk factors and outcomes. Late mortality, second cancers, late morbidity, health services utilization, continuity of care, and educational outcomes, among those diagnosed before age 20 between 1970 to 1995, and followed to 2000, have been examined. Results: Survivors experienced a 9-fold increase in mortality (SMR 9.1, 95% CI 7.8–10.5). Risk of developing a second cancer was 5 times higher than in the general population (SIR 5.0, 95% CI 3.8–6.5). Survivors had three times the odds of being hospitalized (OR 2.97, 95% CI 2.56–3.45) in a three-year period (1998–2000). Survivors were significantly more likely than the population group to consult any physician (excluding oncologists) (adj. RR 1.61, 95% CI 1.51–1.70). Survivors were found to experience a drop in continuity of primary health care as they aged and transitioned into adult care. Survivors were significantly more likely than their peers to receive special education (32.5% vs. 14.1%), most significantly among CNS survivors who received cranial irradiation. Conclusions: Survivors of childhood and adolescent cancers have severe long term health issues and increased health care utilization. Survivors of CNS tumors were at highest risk of poor health and educational outcomes measured. Data linkage provides useful insights for survivorship research. No significant financial relationships to disclose.