Development of Pediatric Eye Questionnaires for Children With Eye Conditions

• Published in: American journal of ophthalmology Vol. 200; pp. 201 - 217
• Main Authors: Hatt, Sarah R., Leske, David A., Castañeda, Yolanda S., Wernimont, Suzanne M., Liebermann, Laura, Cheng-Patel, Christina S., Birch, Eileen E., Holmes, Jonathan M.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.04.2019; Elsevier Limited
• Subjects: Adolescent; Child; Child, Preschool; Children & youth; Enrollments; Eye Diseases - diagnosis; Eye Diseases - psychology; Female; Health Status; Humans; Infant; Infant, Newborn; Male; Ophthalmology; Parents & parenting; Patients; Pediatrics; Quality of Life - psychology; Questionnaires; Retina; Sickness Impact Profile; Visual Acuity - physiology; United States > US; Texas; Minnesota
• ISSN: 0002-9394; 1879-1891; 1879-1891
• DOI: 10.1016/j.ajo.2019.01.001

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. Questionnaire development study. 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). 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. 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.