Caregiver burden assessment in primary congenital glaucoma

Abstract

Purpose: To assess the magnitude of caregiver burden and depression in primary caregivers of patients with primary congenital glaucoma.

Methods: Fifty-five primary caregivers of children diagnosed with primary congenital glaucoma were evaluated. The magnitude of burden on caregivers was assessed using a Caregiver Burden Questionnaire (CBQ). The overall aggregate burden and burden across 3 domains-socioeconomic, emotional, and psychological-was evaluated. Depressive symptomatology was evaluated using a Patient Health Questionnaire-9 (PHQ-9) standard questionnaire and graded from mild to severe.

Results: The mean age of the presenting children was 8.11±46.71 months; all of them were male. The mean age of the study participants was 33.6±8.36 years (53 female, 2 male). Thirty-nine (71%) individuals were identified to have moderate aggregate burden and 3 (5%) had severe aggregate burden. Twelve (22%) subjects were noted to have moderate depression, while 6 of them (11%) had either severe or very severe grades of depression.

Conclusions: Caregivers of patients with primary congenital glaucoma have significant emotional and psychological burden. Moderate to severe depression may be present in one-third of individuals giving primary care to children with congenital glaucoma.