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.
Res Dev Disabil. 2024 Nov;154:104861. doi: 10.1016/j.ridd.2024.104861. Epub 2024 Oct 25.
Health-related Quality of Life (HRQOL) and its relation with functional vision is understudied in cerebral visual impairment (CVI).
Characterising HRQOL, comparing child self- and parent proxy-reports, and exploring relations with functional vision.
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.
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).
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.
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。
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。
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。
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）。
CVI 中 HRQOL 降低，儿童和家长的观点都很重要。HRQOL 和功能性视力密切相关，一方受损会对另一方产生负面影响。
