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

Abstract

BackgroundHealth-related Quality of Life (HRQOL) and its relation with functional vision is understudied in cerebral visual impairment (CVI). AimsCharacterising HRQOL, comparing child self- and parent proxy-reports, and exploring relations with functional vision. Methods and proceduresSeventy-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 results61 % (self-reported) or 66 % of children (proxy-reported) were at-risk for impaired total HRQOL. Ratings were correlated (rs = 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 (rp = −0.454; p < 0.001), the Flemish CVI Questionnaire was negligibly correlated (rp = −0.244; p = 0.041). Conclusions and implicationsHRQOL 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.