ASRS 2025: Racial and ethnic disparities in retinoblastoma treatment options

Vivienne S. Hau, MD, PhD, a vitreoretinal surgeon and faculty member at the Bernard J Tyson School of Medicine, Kaiser Permanente Med School, and also at the California University of School of Medicine, presented research on racial and ethnic disparities in retinoblastoma diagnosis and treatment. This presentation was given at the 2025 annual scientific meeting of the American Society of Retina Specialists (ASRS).

The study represents a significant advancement over previous research by utilizing a multi-institutional approach through the TriNetX database, analyzing data from 69 healthcare systems over 20 years and examining over 11,000 retinoblastoma patients. The research revealed concerning disparities in diagnosis timing across racial and ethnic groups. Native Hawaiians and Native Americans experienced delayed diagnoses, while white and Black patients were diagnosed earlier. These timing differences correlated with treatment outcomes, as populations diagnosed later were more likely to require enucleation—a treatment typically reserved for advanced disease that physicians try to avoid when possible.

Non-white populations (excluding Black patients) showed higher rates of enucleation, suggesting they presented with more advanced disease stages. Hau emphasized that these disparities likely stem from social determinants of health rather than biological differences. Factors contributing to delayed diagnosis include limited access to early pediatric care, lower socioeconomic status, and geographic distance from specialized care providers like pediatric oncologists. The research highlights systemic healthcare issues that require comprehensive examination to ensure timely, equitable care for all patients.

The study was conducted with significant contributions from 3 University of California Riverside medical students, including Marina Gad El Sayed, who joined the discussion about this presentation. Marina, a third-year medical student, became passionate about pediatric health disparities through her mentor's guidance and her own clinical observations during family medicine rotations. She witnessed firsthand how incidental eye findings at well-child visits often went unaddressed for extended periods due to referral processes and care gaps.

Marina's involvement illustrates the broader implications of this research beyond retinoblastoma. She connects these findings to other conditions with known health disparities, such as diabetes and diabetic retinopathy, emphasizing that addressing these inequities requires involvement from all medical specialties, not just ophthalmologists. Her commitment to incorporating awareness of racial and ethnic disparities into future patient encounters demonstrates how this research can influence the next generation of physicians to prioritize preventative care and health equity.