From the UCL Great Ormond Street Institute of Child Health, London, United Kingdom (A.O.R., V.T., L.A.H.G., M.C.B., J.S.R.).
From the UCL Great Ormond Street Institute of Child Health, London, United Kingdom (A.O.R., V.T., L.A.H.G., M.C.B., J.S.R.); School of Human Sciences/Institute for Lifecourse Development, University of Greenwich, London, United Kingdom (V.T.).
Am J Ophthalmol. 2021 Oct;230:167-177. doi: 10.1016/j.ajo.2021.05.017. Epub 2021 Jun 5.
To investigate disagreement between children's self-reported vision-related quality of life (VQoL) and functional vision (FV) and their parents' proxy-reports.
Cross-sectional study.
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.
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.
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.
调查儿童自我报告的与视觉相关的生活质量（VQoL）和功能视力（FV）与其父母的代理报告之间的差异。
横断面研究。
共招募了来自英国 22 家国民保健服务（NHS）眼科部门的 152 名 7-18 岁有视力障碍（VI）的儿童及其父母。为儿童提供了两种适合年龄的视力特定工具的版本，以捕获 VQoL 和 FV，同时还为父母提供了经过修改的版本，以便代表孩子完成（即父母代理报告）。使用 Bland-Altman（BA）方法和基于 0.5 标准差的差异阈值来检查自我报告和父母代理报告之间的差异。使用逻辑回归分析，根据参与者的年龄、性别和临床特征分析差异。
儿童对自己的评价比父母好，但父母对孩子的 VQoL 既低估又高估（平均评分差异=7.7）。随着年龄的增长，孩子自我评估 VQoL 优于父母的可能性每增加 1 岁就会增加 1.18 倍（1.04-1.35）（P=0.013）。尽管父母一直低估孩子的 FV（平均评分差异=-4.7），但没有特征与差异显著相关。
儿童对 VI 影响的自我报告与父母的代理报告之间的差异因年龄而异。这意味着儿童的自我报告必须保持金标准。在无法进行自我报告的情况下，父母的代理报告可能会提供有用的见解，但必须谨慎解释。
