Sickle cell disease (SCD) disproportionately affects the Black community, occurring in approximately 1 in 365 Black births, while about 1 in 13 Black Americans carries the sickle cell trait. Because of this disparity, Black Americans face a higher risk of vision-threatening complications like proliferative sickle cell retinopathy (PSR), an important health equity concern.
Clinicians increasingly use neighborhood-level measures — such as the Social Vulnerability Index (SVI) and Area Deprivation Index (ADI) — to understand how social factors influence outcomes.
A study published in the Journal of the National Medical Association examined whether those neighborhood indices were associated with disease severity, treatment decisions, and visual outcomes in Black patients with proliferative sickle cell retinopathy. Neighborhood disadvantage was not linked to worse outcomes, but treatment often required intensive follow-up regardless of where patients lived.
Proliferative sickle cell retinopathy is a serious eye complication of SCD that causes abnormal new blood vessel growth, classic “sea fan” formations, and potential vision loss. It develops when blocked blood vessels starve the retina of oxygen, prompting the growth of fragile new vessels that can bleed or pull on the retina.
PSR progresses through five Goldberg stages, beginning with peripheral vascular occlusion and advancing to neovascular (“sea fan”) formation, vitreous hemorrhage, and retinal detachment. Vision-threatening complications typically occur in stages III through V, which were the focus of this study.
Because SCD occurs predominantly in people with African ancestry, Black patients experience a disproportionate burden of proliferative sickle cell retinopathy. Improvements in survival among patients with SCD have also increased the cumulative lifetime risk of retinal complications.
The study’s researchers used two tools to assess whether socioeconomic factors influenced PSR: social vulnerability index (SVI) and area deprivation index (ADI). SVI is a place-based index, database, and mapping application created by the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR) to assess neighborhood-level social determinants of health (SDOH) on 16 social factors, including:
ADI is a tool that measures neighborhood socioeconomic disadvantage using income, education, employment, and housing data. It ranks areas on a scale from 1 to 100 nationally (or 1 to 10 by state), with higher numbers representing greater hardship.
Previous studies have linked higher deprivation to worse outcomes in diabetic retinopathy and other retinal diseases, prompting investigators to ask whether the same was true for proliferative sickle cell retinopathy.
The retrospective cohort study included 110 eyes from Black patients with Goldberg stages III-V of PSR who were seen at a metropolitan academic ophthalmology center between 2014 and 2022. Researchers used electronic health records (EHRs) to extract patients’ demographics, treatment patterns, and clinical outcomes.
At the study’s conclusion, neither SVI nor ADI predicted:
Researchers hypothesized that neighborhood disadvantage might influence presentation or outcomes, but that association was not observed in this cohort.
Although neighborhood indices can help identify population-level disparities, they may not reflect the barriers facing individual patients. Transportation reliability, caregiver availability, work schedules, insurance instability, health literacy, and access to retina specialists all influence whether patients can adhere to the intensive follow-up required for PSR management.
The absence of statistically significant associations doesn’t mean social determinants of health are unimportant. Instead, the findings suggest providers should avoid relying solely on neighborhood-level indices when assessing risk for individual patients. Individualized assessments remain essential for delivering equitable care for Black patients — especially those with sickle cell disease.
Pars plana vitrectomy (42 percent) was the most common initial treatment, followed by panretinal photocoagulation (36 percent) and intravitreal injections (10 percent).
If follow-ups are missed, it can increase the risk of vision loss for Black patients with proliferative sickle cell retinopathy.
For clinicians, adopting certain interventions may be more impactful than neighborhood-level screening tools alone.
These may include:
Although neighborhood-level deprivation scores were not associated with outcomes in this cohort, the findings should be interpreted cautiously.
There were several limitations in the study:
Future research on PSR should:
While neighborhood disadvantage measured by SVI and ADI was not associated with disease severity or outcomes in this study, the findings highlight the complexity of caring for Black patients with proliferative sickle cell retinopathy. For ophthalmologists, retina specialists, and multidisciplinary care teams, individualized assessment of social barriers — and strategies to support long-term follow-up — may be more valuable than relying on neighborhood-level indices alone.
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