Database completeness and evaluation of potential barriers and facilitators of data collection in the national pediatric cancer registry in Ethiopia

Abstract

Pediatric cancer remains a leading cause of death among children in low- and middle-income countries. Hospital based cancer registries are essential to inform interventions to improve outcomes. Ethiopia launched its first hospital-based national pediatric cancer registry at five hospitals in 2022. The registry was maintained in REDCap with continuous progressive updates to improve data quality. This mixed-methods study evaluated data completeness and identified barriers and facilitators to data collection and entry. Quantitative analysis involved a presence check of 522 medical records from one hospital, Tikur Anbessa Specialized Hospital. Qualitative analysis involved thematic coding of transcripts from two quarterly meetings. More than 90% of the patient records considered "complete" with a response for 82 of 107 data variables and 73 of 86 required data variables. A breakdown of all the variables showed 1 variable had 0-9% of the records complete, 8 variables had 10-49% of the records complete, and 16 variables had 50-89% of the records complete. Five themes emerged from the qualitative analysis: tool usability, provider responsibility, logistical barriers, training needs, and gaps in specificity. Training sessions improved data quality and completeness. The increase in specificity concerns suggests growing user engagement and a desire for registry refinement. Ethiopia's pediatric cancer registry has demonstrated the feasibility and effectiveness of establishing such systems in low- and middle-income countries. Sustainability requires continuous training, strong stakeholder engagement, and active national and international collaboration. Ongoing customization of the registry to local contexts is essential for long-term scalability and integration into the national health information system.