Disparities in United States Retinoblastoma Presentation, Management, and Local Recurrence in the National Cancer Database, 2004-2016.
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PURPOSE: To investigate patient-level differences in retinoblastoma presentation, treatments, and outcomes within the United States (US). DESIGN: Retrospective registry-based analysis. PARTICIPANTS: One thousand, four hundred and four retinoblastoma cases in the National Cancer Database, 2004-2016, a US-based cancer registry. METHODS: Patient characteristics and treatments were investigated over time. Primary treatment was classified as enucleation, local tumor destruction, chemotherapy, and radiation. Multivariable logistic regression models evaluated extraocular disease at presentation, treatment, and local recurrence after primary globe-sparing therapy. MAIN OUTCOME MEASURES: Odds ratios (ORs) for extraocular disease at presentation; primary treatment modality; local recurrence after primary globe-sparing therapy. RESULTS: Extraocular disease affected 13% of patients at presentation (N = 178). All-cause mortality among the entire cohort was 3.1% (n = 44) at last follow-up Those who were non-White, who were uninsured or had government-funded insurance, or with nonmetropolitan residence had significantly greater odds of extraocular disease (OR 2.21-3.64 for non-White vs. White non-Hispanic patients, OR 2.05-2.95 for uninsured or Medicaid/Medicare/government-funded vs. private/commercial insurance, and OR 1.80 for nonmetropolitan vs. metropolitan residence). Between 2004 and 2016, utilization of chemotherapy (55%-73%) and local tumor destruction (17%-27%) increased. Enucleations remained overrepresented among Hispanic patients (63% received enucleation in 2016, vs. 35% non-Hispanic patients; OR = 1.83 (95% confidence interval [CI] 1.22-2.75) for enucleation among Hispanic vs. White, non-Hispanic patients). Patients with Medicaid/Medicare/government insurance and nonmetropolitan residents also had higher odds of enucleation, and nonmetropolitan patients had higher odds of local recurrence after primary globe-sparing therapy. CONCLUSIONS: Despite an overall decline in enucleation and increase in globe-sparing therapy between 2004 and 2016, Hispanic, Medicaid/Medicare/government-insured, and nonmetropolitan patients continued to have higher odds of extraocular disease at presentation and higher odds of undergoing enucleation as primary therapy. This suggests limitations in access to care and that shifts toward globe-sparing treatment (chemotherapy and local tumor destruction) did not occur equally across all patient groups. Further investigations into these disparities are warranted. FINANCIAL DISCLOSURE(S): Proprietary or commercial disclosure may be found in the Footnotes and Disclosures at the end of this article.