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.