Improving follow-up rates by optimizing patient educational materials in retinopathy of prematurity

PURPOSE To examine the impact of newly designed retinopathy of prematurity (ROP) patient educational materials adherent to health literacy guidelines on improving parent understanding of ROP, perceived importance of follow-up care, and subsequent outpatient follow-up attendance rates. METHODS This was a repeated-measures study of parents of premature infants at risk for developing ROP. ROP educational materials were redesigned to adhere to current NIH and AMA reading level guidelines. Participants completed surveys that assessed understanding of ROP and perceived importance of clinic follow-up before and after receiving either materials currently available on the website of the American Association for Pediatric Ophthalmology and Strabismus (AAPOS), or the newly designed materials. Results were analyzed to evaluate for an improvement in parent knowledge of ROP and follow-up compliance. RESULTS Parent ROP knowledge scores improved significantly after receiving educational materials for both the AAPOS materials (55.9% vs 83.7% [P\ 0.001]) and the new materials (60.9% vs 91.8% [P \ 0.001]). Average post-survey ROP knowledge scores were significantly higher among participants that received the new materials compared to the AAPOS materials (91.8% vs 83.7%, [P\ 0.001]). Follow-up attendance rates improved in both groups, with a significantly improved rate from pre-study baseline among the new materials group (80.0% vs 68.2%, [P 5 0.008). CONCLUSIONS Implementation of educational materials significantly improved parent understanding of ROP; combined with knowledge assessment, it also improved follow-up compliance. Materials designed to adhere to health literacy guidelines are the most effective resources for improving knowledge of ROP and follow-up attendance. ( J AAPOS 2023;27:134.e1-5)