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

Abstract

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. Results Caregivers had a mean age of 42.7±11.7 years, and 75% were mothers. In primary CarCGQoL analyses (n=19), scores were strongly inversely associated with PHQ-9 scores (rs=−0.73, p<0.001); 50% of the full cohort reported at least mild depressive symptoms and 25% moderate-or-greater symptoms. CarCGQoL scores were lower among caregivers of children with bilateral vs unilateral ONH (19.8±7.6 vs 29.9±10.3, p=0.03) and were associated with nystagmus (rpβ=−0.55, p=0.01); nystagmus was also associated with higher PHQ-9 scores (rpβ=0.63, p=0.003). Internal consistency was high among complete responders (Cronbach’s α=0.93), although exploratory Rasch analysis identified greatest misfit for the modified item addressing the child’s ability to see. Conclusion Depressive symptoms were common and closely associated with lower modified CarCGQoL scores, while bilateral ONH and nystagmus were associated with poorer caregiver-reported outcomes. These findings support greater attention to caregiver well-being in ONH care and further evaluation of the modified CarCGQoL in larger cohorts.