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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 [β=-0.75, 95% confidence interval (CI): -1.22, -0.27; P=0.003]. A poor QoL was noted with mother caregivers (β=-0.46, 95% CI: -0.87, -0.04; P=0.031) and those caring for blind children (vision <20/200 in the better eye) (β=-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=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.
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9.1.2 Juvenile glaucoma (Part of: 9 Clinical forms of glaucomas > 9.1 Developmental glaucomas)
1.4 Quality of life (Part of: 1 General aspects)