Search

Purpose: To investigate disagreement between children's self-reported vision-related quality of life (VQoL) and functional vision (FV) and their parents' proxy-reports., Design: Cross-sectional study., Methods: A total of 152 children aged 7-18 years with visual impairment (VI) (defined by the World Health Organization), and their parents, were recruited from 22 National Health Service (NHS) ophthalmology departments in the United Kingdom. Age-appropriate versions of 2 vision-specific instruments, capturing VQoL and FV, were administered to children alongside modified versions for completion by parents on behalf of their child (ie, parent proxy-report). Disagreement between self-report and parent proxy-report was examined using the Bland-Altman (BA) method and a threshold of disagreement based on 0.5 standard deviation. Disagreement was analyzed according to participants' age, sex, and clinical characteristics, using logistic regression analyses., Results: Children rated themselves as having better outcomes than their parents did, although parents both under- and overestimated their child's VQoL (mean score difference = 7.7). With each year of increasing age, there was a 1.18 (1.04-1.35) higher odds of children self-rating their VQoL better than their parents (P = .013). Although parents consistently underestimated their child's FV (mean score difference = -4.7), no characteristics were significantly associated with differences in disagreement., Conclusions: Disagreement between child self-report on the impact of VI and their parents' proxy-reports varies by age. This implies that self-report from children must remain the gold standard. Where self-reporting is not possible, parent proxy-reports may provide useful insights, but they must be interpreted with caution., (Copyright © 2021 Elsevier Inc. All rights reserved.)