Ethnic, Racial, and Socioeconomic Disparities in Retinoblastoma

IMPORTANCE Most children with retinoblastoma in the United States are diagnosed as having a large intraocular tumor burden that requires intensive ocular-salvage treatment or enucleation. OBJECTIVE To investigate the effect of socioeconomic status, race, and ethnicity on the extent of disease and the outcomes of retinoblastoma. DESIGN, SETTING, AND PARTICIPANTS A population-based review of 18 Surveillance, Epidemiology, and End Results (SEER) registries. From January 1, 2000, through December 31, 2010, 830 cases of retinoblastoma were recorded for children aged 0 to 9 years. Data were collected and analyzed from January 1, 2000, through December 31, 2010, with the last follow-up on December 31, 2010. EXPOSURES County-based socioeconomic variables analyzed included poverty level, educational attainment, language isolation, crowding, unemployment, and percentage of immigrants. MAIN OUTCOMES AND MEASURES Extent of disease, ocular outcome, and children's survival. RESULTS Of the 830 individuals included, Hispanic children had a higher percentage of extraocular disease (86 of 261 [33.0%] vs 102 of 510 non-Hispanic children [20.0%]; odds ratio [OR], 1.97 [95% CI, 1.38-2.79]). The percentage of extraocular cases was also higher in counties with the following low socioeconomic status indicators: higher vs lower poverty status (115 of 413 [27.8%] vs 73 of 358 [20.4%]; OR, 1.51; 95% CI, 1.06-2.14); lower vs higher educational attainment (115 of 400 [28.7%] vs 73 of 371 [19.7%]; OR, 1.65; 95% CI, 1.16-2.34); higher vs lower levels of crowding (124 of 398 [31.2%] vs 64 of 373 [17.2%]; OR, 2.18; 95% CI, 1.53-3.13); higher vs lower unemployment (119 of 411 [28.9%] vs 69 of 360 [19.2%]; OR, 1.72; 95% CI, 1.21-2.45); higher vs lower language isolation (117 of 388 [30.2%] vs 71 of 383 [18.5%]; OR, 1.89; 95% CI, 1.34-2.70); and higher vs lower percentage of immigrants (109 of 386 [28.2%] vs 79 of 385 [20.5%]; OR, 1.52; 95% CI, 1.08-2.16). Higher rates of enucleation were associated with low educational attainment (265 of 401 [66.1%] vs 309 of 421 [73.4%]; OR, 1.42; 95% CI, 1.04-1.93), a higher level of crowding (316 of 416 [76.0%] vs 258 of 406 [63.5%]; OR, 1.81; 95% CI, 1.32-2.48), and Hispanic origin (202 of 271 [74.5%]; OR, 1.41; 95% CI, 1.01-1.98). Relative survival at 5 years was lower among black compared with non-Hispanic white children (92.7% vs 99.2%; P < .001). CONCLUSIONS AND RELEVANCE Significant disparities exist in the care and outcomes of children with retinoblastoma. A low socioeconomic status negatively affects disease extent and ocular outcomes, presumably by limiting access to primary and cancer-directed care. Hispanic children in particular have more advanced disease and higher rates of enucleation.