Health-related quality of life at age 10 years in very low-birth-weight children with and without threshold retinopathy of prematurity

Objective: To describe parental perspectives on health status and health-related quality of life (HRQL) at age 10 years in children with birth weights less than 1251 g who participated in the multicenter Cryotherapy for Retinopathy of Prematurity (CRYO-ROP) study. Methods: In 244 participants in the randomized CRYO-ROP trial and 102 CRYO-ROP participants who did not develop ROP, the Health Utilities Index (HUI) system was used to characterize health status for the following 8 attributes: vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain. Using a utility formula, HRQL was determined for each child on a scale from 0.0 (dead) to 1.00 (perfect health). Results: The proportion of the ROP-randomized group with limitations in 4 attributes or more was 20.6% compared with 2.0% for the no-ROP group. Within the ROP-randomized group, the proportion of "sighted" children with limitations in 4 attributes or more was 6.4% vs 46.5% in the "blind/low vision" group. The median HRQL score for the ROP-randomized children was lower than for the no-ROP children (0.72 vs 0.97, P<.001); the median HRQL score for the sighted-randomized children was 0.87 vs 0.27 for the blind/low vision children (P<.001). Conclusions: Threshold ROP was associated with functional limitations in health attributes and reduction in HRQL scores at age 10 years. Furthermore, among children who developed threshold ROP, a greater reduction in HRQL scores was found among children with a poor visual outcome compared with those with better sight.