Loss to Follow-Up Rates Among Pediatric Sickle Cell Disease Patients in an Ophthalmology Clinic

Purpose: To report the rates of loss to follow-up of pediatric patients with sickle disease. Methods: This retrospective cohort analysis included patients with sickle cell disease who were referred from Boston Children’s Hospital hematology division and had an ophthalmic examination from January 2014 to 2024. Loss to follow-up was defined as failure to attend an appointment within 6 months of the scheduled date. After adjusting for covariates, the prevalence of sickle cell retinopathy, maculopathy, and systemic conditions (eg, stroke, acute chest syndrome, vaso-occlusive crisis, asthma, hospitalization) was tabulated and compared between the loss to follow-up and non–loss to follow-up groups. Results: Among the 255 included patients with sickle cell disease, 165 (65%) had at least 1 loss to follow-up event, with 66 (26%) having attended only 1 visit. Of the patients (n = 99) who did follow-up eventually, the median duration of loss to follow-up was 17.2 months/523.5 days (interquartile range, 335.5-655), and the mean duration was 25.1 months/754 days (SD, 611.7). In the entire cohort, sickle cell retinopathy was present in 61 eyes (24%), while the rate of coexisting major systemic comorbidities was 13%. No statistically significant differences in demographics, retinal findings, or systemic outcomes existed between the 2 groups. Conclusions: More than half of the pediatric patients with sickle cell disease were lost to follow-up, many with retinopathy and maculopathy. It is important to monitor this patient population to prevent disease progression and visual impairment.