Caregiver Burden in Primary Congenital Glaucoma

Purpose: To evaluate the demographic, clinical, and socioeconomic factors associated with variation in the quality of life (QOL) in caregivers of children with primary congenital glaucoma (PCG) in south India. Design: Cross-sectional survey. Methods: Caregivers of children younger than 18 with diagnosed PCG were prospectively enrolled at Aravind Eye Hospital in Madurai and Coimbatore, India. Participants completed 2 questionnaires, the PHQ-9 (9-item Patient Health Questionnaire) and the CarCGQoL (Caregivers Congenital Glaucoma QOL Questionnaire). Clinical, demographic, and socioeconomic data were obtained for each child-caregiver dyad. Rasch-calibrated scores were calculated for patient-reported outcome measures. Spearman correlation and linear regression were used to analyze data to determine associations with caregiver QOL. Results: There were 70 caregivers (mean age 32.1, 77.1% female) of 70 children with PCG (mean age 7.7, 37.1% female) included in the study. In univariate and multivariable analyses, child's age (β = −0.04; 95% confidence interval, −0.08 to −0.01) and duration of disease (β = − 0.03; 95% confidence interval, −0.07 to −0.01) were the only factors associated with CarCGQoL. Survey items related to anger, self-confidence, irritability, appetite, and interest in leisure activities had the lowest scores. There was a negative correlation between CarCGQoL and PHQ-9 scores (r = −0.66, P <.01), indicating that worse caregiver QOL was significantly correlated with more depressive symptoms. Conclusion: This study identified traits associated with QOL decline, as well as the QOL issues most likely to affect caregivers of children with PCG in south India. Findings from this study may be important for designing interventions to improve caregivers' QOL, thereby maximizing their ability to care for children with PCG.