Development of Pediatric Eye Questionnaires for Children With Eye Conditions

Purpose: To develop patient-derived Pediatric Eye Questionnaires (PedEyeQ) to separately assess eye-related quality of life (ER-QOL) and functional vision in children with eye conditions. Design: Questionnaire development study. Methods: A total of 444 children (0 to <18 years old), across 10 diagnostic categories, were enrolled at 2 sites. All parents (n = 444) and 277 children (5 to <18 years old) completed master questionnaires, developed from patient-derived concerns. Factor analysis was performed to identify unidimensional domains (eigenvalue >1.0) and Rasch analyses (differential item functioning, targeting, fit) to reduce items (separate analyses for subjects aged 0-4, 5-11, and 12-17 years and for each factor). Results: The Child 5- to 11-year-old PedEyeQ consisted of 4 unidimensional domains/questionnaires: functional vision, bothered by eyes/vision, social, frustration/worry (10 items each). The Child 12- to 17-year-old PedEyeQ consisted of the same 4 domains (total 39 items). The Proxy 0- to 4-year-old PedEyeQ consisted of 3 questionnaires/domains: functional vision, bothered by eyes/vision, social (total 29 items). The Proxy 5- to 11-year-old PedEyeQ consisted of 5 questionnaires/domains: functional vision, bothered by eyes/vision, social, frustration/worry, eye care (total 39 items), as did the Proxy 12- to 17-year-old PedEyeQ (total 42 items). The Parent PedEyeQ consisted of 4 questionnaires/domains: impact on parent/family, worry regarding child's eye condition, worry regarding child's self-perception and interactions, worry regarding child's visual function (total 35 items). Rasch look-up tables were created for scoring. Conclusions: By following a rigorous approach, we have developed Pediatric Eye Questionnaires for separately assessing functional vision and ER-QOL domains in children of any age and with any eye condition.