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J. Odom, C. Hix, S. Cohen, C. Harris, H. Humble, T.L. Schwartz; Assessing Quality of Life in School–Aged Low Vision Patients: A Comparison of Child and. Proxy Assessments. . Invest. Ophthalmol. Vis. Sci. 2004;45(13):5003.
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© ARVO (1962-2015); The Authors (2016-present)
Purpose: Quality of life assessments provide important information to guide clinical interventions. Although QOL assessments of adults emphasize the importance of using the person affected by treatment whenever possible, pediatric assessments frequently use the responses of parents or guardians. We compare the assessments of vision related quality of life of proxies (parents or guardians) and children. Methods: A preliminary vision–related QOL questionnaire consisting of 116 items was administered to parents and their children aged 5–18 years in a clinical situation. Children < 8 years had only proxy interviews completed. Children > 9 years had both proxy and child interviews completed. The proxy was most frequently the child’s mother. Exclusions included any handicap not related to vision. Scores were assigned to item responses, with higher scores indicative of less impairment. We created three subscales by selecting six items each in the domains of school functioning, mobility, and leisure activities. A fourth scale consisted of a single item pertaining to overall visual function. We compared the responses of children and their proxy respondent using t–tests and regression analysis. Results: A total of 14 complete parent/child interview sets were obtained. When comparing parent and child average scores, children consistently scored themselves higher than their proxy: overall vision (p = 0.0047), mobility (p = 0.007), and leisure (p =0.02). The exception to this pattern was the ratings on school that did not differ significantly between children and their proxies (p > 0.10), Conclusions: Proxies consistently evaluate the quality of life of school–aged children as lower than the children themselves do. The difference becomes nonsignificant in the case of school related performance possibly because both the proxies and the children receive the same information regarding the child’s performance in the form of grades. This difference in perceived QOL is important in interpreting information received from proxies related to school aged children.
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