Abstract
Abstract: :
Purpose: We compared the assessments of vision related quality of life of proxies (parents or guardians) and children. Methods: A vision–related QOL questionnaire consisting of 116 items was administered to children aged 9 –18 years and a proxy. 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. 16 Subscales were constructed based on content analysis. We compared the responses of children and their proxy respondent using t–tests and regression analysis. Results: A total of 21 complete interview sets were obtained. Ages ranged from 9–17 years (mean = 11.3; SD=2.3 years). Almost 60.0 % of patients were male. Children scored themselves statistically significantly higher than their proxy on Overall Vision (p <0.04), Mobility (p< .003), Physical Functioning (p<0.02), Recreation & Leisure (p <0.04), Coping (p<0.03), Self–Esteem (p<0.02), Activity of Daily Living (ADL) (p<0.004), Emotional/Mental Health (p<0.05). No statistically significant differences were measured on the following scales; Eye Symptoms, Parental Impact, Family Functioning, Social/Peer Functioning, Social Support, Accommodative Devices, Accommodative Adjustment, and School. Conclusions: 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. Although the choice of proxies may be necessary and appropriate, researchers should be aware that proxies consistently evaluate the vision related QOL of school–aged children as lower than the children themselves evaluate their QOL. The effect is greatest in issues related to ADLs and Mobility.
Keywords: clinical research methodology • visual development • low vision