Caregiver-Reported Stressors Involved in Caring for a Child with Optic Nerve Hypoplasia

Purpose

To characterize quality of life (QoL) and depressive symptoms among caregivers of children with optic nerve hypoplasia (ONH), identify associated demographic and clinical factors, and explore the measurement properties of a modified caregiver QoL instrument. Patients and methods: This cross-sectional survey included 20 primary caregivers of children with ONH who completed a modified 20-item Caregiver's Congenital Glaucoma Quality of Life (CarCGQoL) questionnaire (0-40; higher scores indicate better self-reported QoL), the Patient Health Questionnaire-9 (PHQ-9; 0-27), and a demographic and clinical survey. CarCGQoL analyses required completion of ≥16 of 20 items; clinical and demographic associations and measurement properties were explored.