The Association of Race, Ethnicity, and Insurance Status with the Visual Acuity of Retinoblastoma Survivors in the IRIS® Registry

ABSTRACT

Purpose

To identify sociodemographic factors associated with the visual outcomes of retinoblastoma survivors.

Methods

Retrospective cohort study using a US-based clinical data registry. All individuals < 18 years of age with a history of retinoblastoma in the Intelligent Research in Sight (IRIS®) Registry (1/1/2013–12/31/2020). The primary outcome was visual acuity below the threshold for legal blindness (20/200 or worse) in at least one eye. Multivariable logistic regression was used to evaluate the association between visual outcomes and age, sex, laterality, race, ethnicity, type of insurance, and geographic location.

Results

This analysis included 1545 children with a history of retinoblastoma. The median length of follow-up was 4.1 years (IQR, 2.2–5.9 years) and the median age at most recent clinical visit was 12 years (IQR, 8–16 years). Retinoblastoma was unilateral in 54% of cases. Poor vision in at least one eye was identified in 78% of all children and poor vision in both eyes in 17% of those with bilateral disease. Poor visual outcomes were associated with unilateral diagnosis (OR, 1.55; 95% CI,1.13–2.12; p = .007), Black race (OR, 2.03; 95% CI, 1.19–3.47; p = .010), Hispanic ethnicity (OR, 1.65; 95% CI, 1.16–2.37; p = .006), and non-private insurance (OR, 1.47; 95% CI, 1.02–2.10; p = .037).

Conclusions

Poor visual outcomes appear to be more common among Black, Hispanic, and publicly insured children with a history of retinoblastoma, raising concerns regarding healthcare inequities. Primary care physicians should ensure that young children receive red reflex testing during routine visits and consider retinoblastoma in the differential diagnosis of abnormal eye exams.

KEYWORDS:

• Childhood cancer survivors
• enucleation
• racial and ethnic disparities
• retinoblastoma
• socioeconomic status
• visual acuity

Disclosure statement

JWM – consultant fees from Genetech/Roche, Sunovion, and KalVista Pharmaceuticals, Ltd, and ON Therapeutics; stock options and grants from the Lowy Medical Research Institute, Ltd Mactel Study; honorarium from Heidelberg Engineering: personal fees from Aptinyx, Inc board of directors; and stock options and other fees from Ciendias Bio Equity outside the submitted work; and participated in 1 day COVID-19 Webinar and in 2-day Virtual Imaging Symposium; Patent for US 7,811,832 with royalties paid by ON Therapeutics to Massachusetts Eye and Ear, royalty sharing per institutional policy: not yet commercialized and a patent for US 5,798,349: US 6,225,303; US 6,610,679; CA 2,185,644; CA 2,536,069 with royalties paid by Valeant Pharmaceuticals to Massachusetts Eye and Ear, royalty sharing per institutional policy. DGH – Rebion, Inc (founder, equity); Luminopia, Inc (advisor, equity). ACL – consultant for Regeneron.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/09286586.2024.2315075.

Additional information

Funding

All authors – Massachusetts Eye and Ear Clinical Data Science Fund, TE – National Institute of Health grant number P30 EY003790, IO – Agency for Healthcare Research and Quality grant number T32HS000063, Boston Children’s Hospital Office of Faculty Development Grant, Knights Templar Eye Foundation Career-Starter Research Grant. IO, DGH – Children’s Hospital Ophthalmology Foundation, Inc, Boston, MA. The sponsor or funding organizations had no role in the design or conduct of this research.