Nationwide incidence and survival of retinoblastoma in the USA between 1996 and 2018: a review of 5730 cases

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BACKGROUND: Retinoblastoma is the most common intraocular cancer in children, with significant variations in incidence and Survival. This study sought to evaluate nationwide retinoblastoma incidences and survival rates in the United States from 1996 to 2018. METHODS: We extracted data from the North American Association of Central Cancer Registries (NACCR) and the National Program of Cancer Registries between 1996 and 2018. Cases were stratified by sex, age, race, Hispanic origin, urban or rural origin, stage of the disease, and state of residence and compared by laterality. We applied SEER*Stat version 8.4.0.1 software for age-adjusted incidence rates (AAIR) and annual average per cent change (AAPC) and JoinPoint version 4.9.1.0 software to assess incidence trends. Survival trends were evaluated with JPSurv online software. RESULTS: The study comprised 5730 patients with a crude incidence rate (CIR) of 0.89 per million. The incidence declined from 29.6 per million in the first year of life to 16.5 in the second year. The CIR for unilateral and bilateral diseases were 0.61 and 0.27, respectively. Males had a slightly higher and significant crude incidence of 0.93 versus 0.86 for females. Hispanics had the highest rate of 1.48 in general. Treatment data revealed chemotherapy usage in 39% of unilateral and 78% of bilateral patients. The 5-year cumulative relative Survival did not significantly differ between unilateral (96.8%) and bilateral (97.0%) patients. A slight but significant annual decline in CIR was observed, with a trend toward an increase in the percentage of patients diagnosed in the first year of life. CONCLUSIONS: This study indicated an overall decrease in incidence but a slight increase in early diagnosis. Findings underscore the need for consistent surveillance, early detection strategies, and personalized care to improve patient outcomes. The changes in the Survival in the unilateral disease require further investigations and mitigation strategies.

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