ID #888 Pediatric Diffuse Intrinsic Pontine Glioma in Indonesia: Baseline Demographic and Clinical Data from a National Referral Center
Lusi Tania Rahmartani, Ludi Dhyani Rahmartani, Mohamad Yanuar Amal, Eka Susanto, Kevin Gunawan, Michael Nathaniel Budiarso, Ulfah Salsabila, Sri Mutya Sekarutami, Endang NuryadiAbstract
Background
Diffuse intrinsic pontine glioma (DIPG) is a rare and highly aggressive pediatric brain tumor with dismal prognosis. While survival and treatment patterns have been well described in high-income countries, data from low–middle income countries remain limited, and Indonesia currently lacks a national DIPG registry. This study aims to describe the demographic characteristics, treatment patterns, and survival outcomes of pediatric DIPG treated at Indonesia’s national referral center.
Methods
We conducted a retrospective cohort study of children diagnosed with DIPG at Cipto Mangunkusumo National General Hospital between January 2018 and June 2025. Demographic variables, treatment modalities, and survival outcomes were extracted from medical records. Overall survival (OS) was estimated using the Kaplan–Meier method.
Results
A total of 39 pediatric patients with DIPG were identified over an eight-year period. Median age at diagnosis was 5 years (range 1–17), with 59% female. Diagnosis was established primarily using clinico-radiologic MRI criteria. Nineteen patients (49%) did not receive radiotherapy (RT), most commonly due to rapid clinical deterioration. Twenty patients (51%) received tumor-directed treatment, including RT only (n = 12), RT combined with chemotherapy (n = 5), and Gamma Knife radiosurgery (n = 3). Median survival was 2 months (95% CI 1.0–10.0) in patients who did not receive RT. In contrast, median survival was 9 months (95% CI 7.0–32.5) in the RT-only group, 8 months (95% CI 3.0–25.1) in the RT-chemotherapy group, and 7 months (95% CI 5.0–10.0) in patients treated with Gamma Knife. The median overall survival for the entire cohort was 6 months (range 0.1–32.5).
Conclusion
This study provides the first detailed institutional overview of pediatric DIPG demographics and survival outcomes in Indonesia. The marked survival difference between treated and untreated patients highlights the critical role of radiotherapy and underscores the need for a national DIPG registry to support standardized care, timely referral, and future multicenter collaboration.