Caregiver Impact and Understanding of Retinopathy of Prematurity Screening

This research brief collected quantitative data on the impact of retinopathy of prematurity (ROP) screening, including follow-up eye care. In total, 37 survey responses from caregivers of infants who underwent ROP screening at UCLA Medical Centers between January 1, 2011 and February first, 2021 were included, and 17 (46%) of the infants had ROP. In total, 36 (98%) caregivers remembered their child undergoing ROP screening and accurately recalled why their child received the screening along with the outcome. More caregivers of children with ROP reported significant family impact from caring for their preterm child, including having to give things up [10 (59%) versus 3 (15%); <i>p</i> = .0245] and seeing family and friends less [8 (47%) versus 1 (5%); <i>p</i> = .0275]. Children with ROP were more likely to be followed by more than one eye specialist [10 (59%) versus 2 (10%); <i>p</i> = .0011] and diagnosed with additional eye conditions [4 (24%) versus 0; <i>p</i> = .0091]. Caregivers of children with ROP experienced increased long-term family impact compared to caregivers of children who were screened but did not have ROP.