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: 444 children (0 to <18 years old), across 10 diagnostic categories, were enrolled at two 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 0-4, 5-11 and 12-17 year olds and for each factor). Results: The Child 5-11 year-old PedEyeQ consisted of four unidimensional domains/ questionnaires: functional vision, bothered by eyes/vision, social, frustration/worry (10 items each). The Child 12-17 year-old PedEyeQ consisted of the same four domains (total 39 items). The Proxy 0-4 year PedEyeQ consisted of three questionnaires/domains: functional vision, bothered by eyes/vision, social (total 29 items). The Proxy 5-11 year-old consisted of five questionnaires/domains: functional vision, bothered by eyes/vision, social, frustration/worry, eyecare (total 39 items) as did the Proxy 12-17 year-old PedEyeQ (total 42 items). The Parent PedEyeQ, consisted of four questionnaires/domains: impact on parent/family, worry re child's eye condition, worry re child's self-perception and interactions, worry re child's visual function (total 35 items). Rasch look-up tables were created for scoring. Conclusions and Relevance: 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.

IMPORTANCE Strabismus is common, affecting 2% to 4% of children, but how children and their families are affected in everyday life is poorly understood.OBJECTIVE To evaluate the association of strabismus with functional vision and eye-related quality of life in children and their families using the Pediatric Eye Questionnaire (PedEyeQ). DESIGN, SETTING, AND PARTICIPANTSThis cross-sectional study was conducted between December 2017 and October 2019 and included 91 children with strabismus and 166 visually normal controls across 3 age groups (0-4, 5-11, and 12-17 years) who were enrolled at Mayo Clinic, Rochester, Minnesota, and Retina Foundation of the Southwest, Dallas, Texas. EXPOSURES Children completed the child PedEyeQ (5 to 11-and 12 to 17-year versions: functional vision, bothered by eyes/vision, social, and frustration/worry domains); parents completed the proxy (0 to 4-, 5 to 11-, and 12 to 17-year versions: functional vision, bothered by eyes/vision, social, frustration/worry, and eye care domains) and the parent PedEyeQ (impact on parent and family, worry about child's eye condition, worry about child's self-perception and interactions, and worry about child's functional vision domains). Rasch-calibrated PedEyeQ scores were calculated for each domain and converted to 0 (worst) to 100. MAIN OUTCOMES AND MEASURES PedEyeQ domain scoresRESULTS Of 91 participants with strabismus, 41 (45.1%) were girls, 74 (81.3%) were white, 4 (4.4%) were Asian, 5 (5.5%) were more than 1 race, 5 (5.5%) were African American, and 2 (2.2%) were American Indian/Alaska Native. Child PedEyeQ domain scores were lower with strabismus vs visually normal controls among children ages 5 to 11 years and the greatest mean (SD) difference was in functional vision (12 [14] points; 95% CI, 6-18; P = .001), and among children ages 12 to 17 years, the greatest mean (SD) difference was in frustration/worry (27 [13] points; 95% CI, 18-36; P < .001). Proxy PedEyeQ domain scores were also lower with strabismus. The greatest difference among children ages 0 to 4 years was in functional vision (13 [9] points; 95% CI, 9-16; P < .001), among children ages 5 to 11 years was in functional vision (26 [10] points; 95% CI, 22-30; P < .001); and among children ages 12 to 17 years was in functional vision (21 [12] points; 95% CI, 12-30; P < .001), social (21 [13] points; 95% CI, 12-30; P < .001), and frustration/worry (21 [13] points; 95% CI, 12-30; P < .001). Parent PedEyeQ domain scores were lower with strabismus; the greatest difference was in worry about child's eye condition (38 [14] points; 95% CI, 34-42; P < .001). CONCLUSIONS AND RELEVANCEStrabismus is associated with reduced functional vision and eye-related quality of life in children. Parents of children with strabismus also experience a reduced quality of life. These findings advance our understanding of how strabismus affects children and their families and should be considered when defining patient management goals.

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PurposeTo identify specific health-related quality of life (HRQOL) and functional vision concerns affecting children with cataracts and common associated conditions as expressed by children or one of their parents (proxy), and HRQOL concerns affecting the parents themselves.MethodsIndividual semi-structured interviews were conducted with parents of children with cataracts (N=31) and with the children themselves (ages 5-17 years; N=16). Transcripts of recorded interviews were evaluated using NVivo software. Specific concerns were identified and coded, and broad themes were identified. The frequency of each theme was calculated, with the frequency of specific concerns within each theme.ResultsRegarding the child's experience, 6 themes were identified: Visual Function (mentioned by 16 of 16 children (100%) and by 26 of 31 parents (84%), Social (94 and 65%), Treatment (81 and 90%), Worry (75 and 10%), Emotions (63 and 68%), and Physical Discomfort (63 and 26%). Worry showed the largest discrepancy between child and their parent; although 75% children reported Worry, only 6% of parents reported that their child experienced Worry (P=0.0009). Regarding the parents' own experience, 5 themes were identified: Worry (100%), Compensation for Condition (100%), Treatment (94%), Emotions (90%), and Affects Family (52%).ConclusionsA wide range of concerns were identified from interviews of children with cataracts and their parents. Concerns reflect the impact of cataracts in physical, emotional, and social domains, and specific concerns will be used for the development of questionnaires to quantify the quality of life and functional vision effects of cataracts.

Purpose: To evaluate the effect of residual amblyopia on functional vision and eye-related quality of life (ER-QOL) in children and their families using the Pediatric Eye Questionnaire (PedEyeQ). Design: Prospective cross-sectional studyMethods: Seventeen children with residual amblyopia (no current treatment except glasses), 48 visually normal controls without glasses and 19 controls wearing glasses (aged 8-11 years) completed the Child 5-11 year PedEyeQ. One parent for each child completed the Proxy 5-11 PedEyeQ, Parent PedEyeQ. Rasch-calibrated domain scores were calculated for each questionnaire domain and compared between amblyopic children and controls.Results: PedEyeQ scores were significantly lower (worse) for children with residual amblyopia than for controls without glasses across all domains; Child PedEyeQ greatest mean difference 18 points worse on functional vision domain (95% CI −29 to −7; P<.001); Proxy PedEyeQ greatest mean difference 31 points worse on functional vision domain (95% CI −39 to −24; P<.001); Parent PedEyeQ greatest mean difference 34 points worse on the worry about the child's eye condition domain (95% CI −46 to −22; P<.001). Compared with controls wearing glasses, PedEyeQ scores were lower for residual amblyopia on the Child frustration / worry domain (P=.03), on four of five Proxy domains (P≤ .05) and on three of four Parent domains (P≤ .05). Conclusions:Residual amblyopia affects functional vision and ER-QOL in children. Parents of amblyopic children also experience lower quality of life. These data help broaden our understanding of the everyday-life impact of childhood residual amblyopia.