Caregiver Burden in Primary Congenital Glaucoma

Abstract Purpose To evaluate the demographic, clinical, and socioeconomic factors associated with quality of life (QOL) in caregivers of children with primary congenital glaucoma (PCG) in south India. Design Cross-sectional survey. Methods Caregivers of children under age 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 Quality of Life 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%CI -0.08, -0.01) and duration of disease (β=- 0.03, 95%CI -0.07, -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 Conclusion This study identified traits associated with QOL decline, as well as the QOL issues most likely to impact 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.