Abstract
Background: To evaluate the quality of life (QoL) measures of caregivers of children with glaucoma using the Caregiver's Congenital Glaucoma Quality of Life (CarCGQoL) questionnaire. Materials and Methods: This was a cross-sectional study undertaken at King Khaled Eye Specialist Hospital, Riyadh, Saudi Arabia. QoL of the caregivers, the main outcome, was assessed using the 20-item CarCGQoL questionnaire. Raw QoL scores of caregivers were converted to Rasch-calibrated interval level scores. A multiple linear regression analysis was performed to identify factors associated with caregivers' QoL. Results: Eighty-five caregivers (46 fathers and 39 mothers) aged 42.5 +/- 7.5 years were included in the study. The mean QoL score of caregivers was 0.63 (+/- 1.05). The presence of additional children with glaucoma in the household had the strongest negative relationship with caregivers' QoL [beta=-0.75, 95% confidence interval (CI): -1.22, -0.27; P=0.003]. A poor QoL was noted with mother caregivers (beta=-0.46, 95% CI: -0.87, -0.04; P=0.031) and those caring for blind children (vision <20/200 in the better eye) (beta=-0.52, 95% CI: -0.98,-0.05; P=0.030) when compared with their reference groups. A 22.3% variance in the QoL score was explained by these three factors (adjusted R-2=0.223). Conclusions: The QoL of caregivers of children with glaucoma was poor. Caregiver's relation to patients, additional children with glaucoma in the family and patient's vision in the better eye could influence a caregiver's QoL. Periodic evaluation of QoL of caregivers is recommended to plan counseling and other support services.