评估脑性视觉障碍儿童的健康相关生活质量及其与功能性视力的关系。

An evaluation of health-related quality of life and its relation with functional vision in children with cerebral visual impairment.

机构信息

Faculty of Medicine, University of Leuven (KU Leuven), Leuven, Belgium.

Department of Development and Regeneration, University of Leuven (KU Leuven), Leuven, Belgium; KU Leuven Child and Youth Institute (L-C&Y), Leuven, Belgium.

出版信息

Res Dev Disabil. 2024 Nov;154:104861. doi: 10.1016/j.ridd.2024.104861. Epub 2024 Oct 25.

DOI:10.1016/j.ridd.2024.104861

PMID:39461247

Abstract

BACKGROUND

Health-related Quality of Life (HRQOL) and its relation with functional vision is understudied in cerebral visual impairment (CVI).

AIMS

Characterising HRQOL, comparing child self- and parent proxy-reports, and exploring relations with functional vision.

METHODS AND PROCEDURES

Seventy-three children with CVI (n females = 33; n males = 40; Mean performance age = 7y2m) were included. HRQOL was measured with Pediatric Quality of Life Inventory (PedsQL) child self- and parent proxy-reports and compared using Wilcoxon signed-rank tests. Risk for impaired HRQOL was evaluated using cut-off scores. Parents scored functional vision using the Insight Questions Inventory and the Flemish CVI Questionnaire.

OUTCOMES AND RESULTS

61 % (self-reported) or 66 % of children (proxy-reported) were at-risk for impaired total HRQOL. Ratings were correlated (r = 0.305; p = 0.013); however, children rated higher total HRQOL compared to parent-proxy (r = 0.382; p = 0.002). The Insight Questions Inventory and the PedsQL proxy-report were correlated (r = -0.454; p < 0.001), the Flemish CVI Questionnaire was negligibly correlated (r = -0.244; = 0.041).

CONCLUSIONS AND IMPLICATIONS

HRQOL is reduced in CVI, and both child and parent perspectives are crucial. HRQOL and functional vision are intricately related, and impairment in one negatively affects the other.

摘要

背景

健康相关生活质量（HRQOL）及其与功能性视力的关系在脑性视觉障碍（CVI）中研究较少。

目的

描述 HRQOL，比较儿童自我报告和家长代理报告，并探讨与功能性视力的关系。

方法和程序

共纳入 73 名 CVI 儿童（女性 n = 33；男性 n = 40；平均表现年龄为 7 岁 2 个月）。使用儿科生活质量问卷（PedsQL）儿童自我报告和家长代理报告来衡量 HRQOL，并使用 Wilcoxon 符号秩检验进行比较。使用临界值分数评估 HRQOL 受损的风险。家长使用洞察力问题清单和佛兰芒 CVI 问卷评估功能性视力。

结果和结论

61%（自我报告）或 66%（代理报告）的儿童存在 HRQOL 受损的风险。评分呈正相关（r = 0.305；p = 0.013）；然而，与家长代理报告相比，儿童的总 HRQOL 评分更高（r = 0.382；p = 0.002）。洞察力问题清单和 PedsQL 代理报告呈负相关（r = -0.454；p < 0.001），佛兰芒 CVI 问卷相关性较低（r = -0.244；p = 0.041）。