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. 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 ( r s =− 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 ( r p β =− 0.55, p=0.01); nystagmus was also associated with higher PHQ-9 scores ( r p β =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.