Related Experiment Video
Updated: Jun 12, 2026
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
SICKLE CELL RETINOPATHY LOST TO FOLLOW-UP STUDY
Jovi C Y Wong1, Meera D Sivalingam2, Matthew Griffin2
1Department of Ophthalmology and Vision Sciences, Temerty Faculty of Medicine, University of Toronto, Toronto, Canada ; and.
Purpose:
To determine the outcomes of patients with sickle cell retinopathy who experienced at least one episode of being lost to follow-up (LTFU) compared with those who attended all appointments.
Methods:
Adult patients with sickle cell retinopathy who visited Wills Eye Hospital Retina service (January 2012-December 2021) with >2 visits were reviewed for LTFU events, defined as failure to return for a follow-up appointment within 6 months of the scheduled date.
Results:
One hundred and eighty-one eyes of 94 patients were included. Fifty-one patients (99 eyes) attended all appointments ("attended group"), whereas 43 patients (82 eyes), or 46%, had at least one LTFU event ("LTFU group"). The mean (SD) LTFU duration was 470 (329) days. In the LTFU group, mean (SD) VA was significantly worse at the final visit (logMAR 0.45 (0.63), Snellen 20/56) and at the post-LTFU visit (0.36 (0.59), 20/46) compared with the pre-LTFU visit (0.3 (0.47), 20/40, P = 0.001). In the attended group, mean (SD) VA was significantly better at the final visit (0.41 (0.63), 20/51) compared with the initial visit (0.52 (0.78), 20/66, P = 0.038).
Conclusion:
Patients with sickle cell retinopathy with an LTFU event have worse visual outcomes compared with patients who attend all appointments.
