Blind Spots: Patient Knowledge and Practices around Ocular Complications in Sickle Cell Disease
Year: 2026
Type: article
Study design: Observational Study
Abstract: Objectives Sickle cell retinopathy (SCR) is a potentially vision-threatening complication of sickle cell disease (SCD), yet patient awareness of ocular risks remains limited. This study aimed to assess knowledge of ocular complications and eye care practices among adult SCD patients. Methods Adult SCD patients at the UI Health Adult Sickle Cell Center completed a structured questionnaire evaluating their understanding of ocular complications and eye care practices. Responses were analyzed to identify knowledge strengths and gaps. Results Among 64 participants, overall knowledge of ocular complications was low (mean score 2.7/7). While most patients knew SCD can affect vision (61%) and that blindness may be preventable (63%), fewer patients recognized that SCD can cause blindness (41%). Only 28% of respondents identified the emergency department as the appropriate first point of care for sudden vision loss. Despite 55% of patients reporting annual eye exams, only 8% could distinguish between refraction testing and dilated fundus exams, suggesting misconceptions about retinal examination among those engaged in eye care. Participants with an established ophthalmologist (n = 36) demonstrated higher mean knowledge scores than those without (n = 20): 2.97 vs 2.30 (mean difference = 0.67, P = .063). Conclusion Knowledge of SCR was limited, with notable gaps in emergency triage and understanding of specialized eye exams. Integrating ophthalmic education into hematology visits may enhance awareness, encourage timely eye care, and improve early detection of vision-threatening disease.
Source: Journal of sickle cell disease.
Language: English
Subfield: Genetics
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,500
OpenAlex ID: W7162397591