Purpose: To determine the outcomes of sickle cell retinopathy (SCR) patients who experienced at least one episode of being lost to follow-up (LTFU) compared to those who attended all appointments.
Methods: Adult SCR patients 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") whilst 43 patients (82 eyes), or 46%, had at least one LTFU event ("LTFU group"). The mean (standard deviation, 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 to 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 to the initial visit (0.52 (0.78), 20/66, p = 0.038).
Conclusion: Patients with SCR with an LTFU event have worse visual outcomes compared to patients who attend all appointments.