LMIC-22. TOWARD A COMPREHENSIVE PEDIATRIC BRAIN TUMOR REGISTRY: ESTABLISHING FUNDAMENTAL VALUE IN INDONESIA TERTIARY HOSPITAL

Abstract

Abstract BACKGROUND Systematic documentation and research on pediatric brain tumor (PBT) have been underreported in Indonesia. Precise and readily available epidemiological data hold significant value in enhancing the PBT service of any center, each with its own distinctive characteristics. We aim to evaluate our PBT registry and service after Cipto Mangunkusumo National General Hospital utilized the St. Jude (SJ) Cares Registry program. METHODS A retrospective observational longitudinal study, carried out at Cipto Mangunkusumo National General Hospital, utilizing primary registry data encompassing patients’ profiles, diagnoses, and follow-up issues from January 2022 to December 2023, was performed. An evaluative review was then carried out to delineate our center’s unique problems and solutions to improve the overall PBT health services. RESULTS A total of 103 patients participated, dominated by females (55.3%), with a median age of 8 (IQR 4-12). The most identified diagnoses were gliomas (48.6%), germ cells (16.5%), and medulloblastomas (8.7%), with high-grade gliomas contributing to the most death (48.4%). The main symptoms contributing to the most extended diagnosis delay (from onset to diagnosis) were puberty issues, motoric paresis, vertigo, macrocephaly, proptosis, disequilibrium, and headache. Some critical findings from this registry evaluation were the mapping of patients’ key clinical symptoms and most diagnoses to be anticipated, factors related to diagnosis delay, and the numerous ineffective yet revisable health service systems that led to incomplete patient data and loss of follow-up. These led to our team’s effort to implement more effective multidiscipline communication (through regular synchronous and asynchronous meetings), orbit the pediatrician to become the St. Jude virtual fellow and recruit more trained data registry specialists. CONCLUSION In conclusion, as each center has unique problems in its own PBT health services, it is essential to have accurate registry data to be the fundamental value and starting point for comprehensively delineating and improving PBT service.