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

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(s) = 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(p) = -0.454; p < 0.001), the Flemish CVI Questionnaire was negligibly correlated (r(p) = -0.244; (p) = 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.