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

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 (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). 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. •Children with cerebral visual impairment are at risk for impaired quality of life.•Children with cerebral visual impairment rate quality of life higher than parents.•61 % of children with cerebral visual impairment report impaired quality of life.•66 % of parents report impaired quality of life in their children.•Impaired functional vision relates to impaired health-related quality of life.