Reading and eye-hand coordination deficits in children with amblyopia may impede their ability to demonstrate their knowledge and skills, compete in sports and physical activities, and interact with peers. Because perceived scholastic, social, and athletic competence are key determinants of self-esteem in school-aged children, these deficits may influence a child's self-perception. OBJECTIVE To determine whether amblyopia is associated with lowered self-perception of competence, appearance, conduct, and global self-worth and whether the self-perception of children with amblyopia is associated with their performance of reading and eye-hand tasks. DESIGN, SETTING, AND PARTICIPANTS This cross-sectional study was conducted from January 2016 to June 2017 at the Pediatric Vision Laboratory of the Retina Foundation of the Southwest and included healthy children in grades 3 to 8, including 50 children with amblyopia; 13 children without amblyopia with strabismus, anisometropia, or both; and 18 control children. MAIN OUTCOMES AND MEASURES Self-perception was assessed using the Self-perception Profile for Children, which includes 5 domains: scholastic, social, and athletic competence; physical appearance; behavioral conduct; and a separate scale for global self-worth. Reading speed and eye-hand task performance were evaluated with the Readalyzer (Bernell) and Movement Assessment Battery for Children, 2nd Edition. Visual acuity and stereoacuity also were assessed. RESULTS Of 50 participants, 31 (62%) were girls, 31 (62%) were non-Hispanic white, 6 (12%) were Hispanic white, 3 (6%) were African American, 4 (8%) were Asian/Pacific Islander, and 3 (6%) were more than 1 race/ethnicity, and the mean [SD] age was 10.6 [1.3] years. Children with amblyopia had significantly lower scores than control children for scholastic (mean [SD
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.
Fixation instability and vergence instability during binocular viewing suggests that discordant binocular visual experience during childhood, especially strabismus, interferes with ocular motor development. Amblyopia adds to instability of the nonpreferred eye. Vergence instability may limit potential for recovery of binocular vision in these children.
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.
IMPORTANCE Deficits in fine motor skills and slow reading speed have been reported in school-aged children and adults with amblyopia. These deficits were correlated with lower self-perception of athletic and cognitive competence. Although perceived competence and social acceptance are key determinants of developing self-perception in young children, the association of amblyopia with self-perception and the association of altered self-perception with fine motor skills to date have not been reported for young children aged 3 to 7 years. OBJECTIVES To investigate whether amblyopia is associated with altered self-perception in young children and to assess whether any differences in self-perception are associated with deficits in vision and fine motor skills. DESIGN, SETTING, AND PARTICIPANTS In this cross-sectional study, conducted at a pediatric vision laboratory from January 10, 2016, to May 4, 2018, healthy children aged 3 to 7 years (preschool to second grade) were enrolled, including 60 children with amblyopia; 30 children who never had amblyopia but had been treated for strabismus, anisometropia, or both; and 20 control children. MAIN OUTCOMES AND MEASURES Self-perception was assessed using the Pictorial Scale of Perceived Competence and Social Acceptance for Young Children, which includes the following 4 specific domains: cognitive competence, peer acceptance, physical competence, and maternal acceptance (total score range, 1-4; higher scores indicate higher perceived competence or acceptance). Fine motor skills were evaluated with the Manual Dexterity and Aiming and Catching scales of the Movement Assessment Battery for Children, second edition (score range, 1-19; higher scores indicate better skill performance). Visual acuity and stereoacuity also were assessed. RESULTS Children with amblyopia (28 girls and 32 boys; mean [SD] age, 6.3 [1.3] years) had significantly lower mean (SD) peer acceptance and physical competence scores compared with the control children (peer acceptance, 2.74 [0.66] vs 3.
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 identify specific health-related quality of life (HRQOL) and functional vision concerns of children with eye conditions, and create comprehensive lists of potential questionnaire items as a first step in developing patient-reported outcome measures. Methods Children experiencing a range of pediatric eye conditions, along with one of their parents, were interviewed to identify specific concerns. Transcribed interviews were reviewed, and specific HRQOL and functional vision concerns were coded independently by two reviewers. Coded concerns were reviewed to formulate questions to address specific child concerns (derived from child and parent interviews) and specific parent concerns. Questions were grouped into bins of like questions. Two comprehensive lists of questions were formulated, one addressing childrelated concerns and one addressing parent-related concerns. Results This study included 180 children and 328 parents. A total of 614 individual child questions were grouped into 36 bins (eg, appearance, coordination, glasses, learning), and 589 parent questions were formulated and grouped into 61 bins (eg, having to assist the child, worry about deterioration, time off work, safety). Conclusions Using rigorous methods based on individual interviews, we identified a comprehensive list of patient- and parent-derived questionnaire items that address functional vision and HRQOL concerns of children with eye conditions and of their parents. We plan to use this large pool of potential questionnaire items to develop a formal set of pediatric outcome measures, and this pool of questions may also be a resource for future research.
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