Implementing a Childhood Cancer Outcomes Surveillance System Within a Population-Based Cancer Registry

Abstract

Purpose Approximately 80% of cases of childhood cancer occur in low- and middle-income countries and are associated with high mortality rates. Assessing outcomes is essential for designing effective strategies to improve outcomes equally worldwide. We implemented a real-time surveillance system, VIGICANCER, embedded in a population-based cancer registry (PBCR) to assess childhood cancer outcomes. Methods VIGICANCER was established in 2009 as an integral part of Cali’s PBCR to collect real-time data on outcomes of patients (age < 19 years) with a new diagnosis of cancer treated in pediatric oncology units in Cali, Colombia. Baseline and follow-up data (death, relapse, treatment abandonment, second neoplasms) were collected from medical records, hospital discharge logs, pathology reports, death certificates, and the National Public Health Insurance database. A quality assurance process was implemented for the system. Results From 2009 to 2013, data from 1,242 patients were included in VIGICANCER: 32% of patients were younger than 5 years, 55% were male, and 15% were Afro-descendants. International Classification of Childhood Cancer group I diagnoses predominated in all age groups except children younger than 1 year old, in whom CNS tumors predominated. Five-year overall survival for all cancers was 51.7% (95% CI, 47.9% to 55.4%) for children (< 15 years), and 39.4% (95% CI, 29.8% to 50.5%) for adolescents (15 to 18.9 years). Five-year overall survival for acute lymphoblastic leukemia was 55.6% (95% CI, 48.5% to 62.2%). Conclusion Our study demonstrates the feasibility of implementing a real-time childhood cancer outcomes surveillance system embedded in a PBCR that can guide interventions to improve clinical outcomes in low- and middle-income countries.