Association of primary congenital glaucoma with quality of life in children and their families.

PURPOSE: To evaluate quality of life (QoL) and family impact in postoperative children with primary congenital glaucoma (PCG) and their parents, and to identify associated factors. METHODS: This cross-sectional, case-control study included 135 children with PCG (mean age, 5.83 ± 2.70 years) and 141 healthy age-matched controls (6.09 ± 3.03 years). Children aged 5 to 11 years completed self-report versions of the Pediatric Eye Questionnaire (PedEyeQ) and Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales, while parents completed age-appropriate proxy reports for children aged 0 to 11 years and the PedsQL Family Impact Module (FIM). RESULTS: Children with PCG demonstrated significantly lower PedEyeQ functional vision scores (mean difference [MD], - 24; 95% CI, - 31 to - 18) and PedsQL total scores (MD, - 12; 95% CI, - 18 to - 7) compared with controls (all P < 0.001). Parents reported substantial burdens in PedEyeQ worry about functional vision (MD, - 35; 95% CI, - 42 to - 29), PedsQL (MD, - 19; 95% CI, - 28 to - 11), and FIM (MD, - 17; 95% CI, - 21 to - 12) (all P < 0.05). Parent proxy-reported scores were significantly lower than child self-reported scores in frustration/worry, physical functioning, and social functioning domains (all P < 0.05). Worse visual acuity, greater myopic spherical equivalent refraction (SER), more glaucoma surgeries, and lower parental education were associated with reduced QoL. CONCLUSIONS: Children with PCG and their parents experience substantial QoL reductions. These findings suggest the need to consider visual rehabilitation and family-centred psychosocial support, in addition to intraocular pressure control.