Clinical ophthalmology (Auckland, N.Z.) · 2026
Caregiver-Reported Stressors Involved in Caring for a Child with Optic Nerve Hypoplasia.
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Karakoleva Ema V, Waldron Olivia, Kunselman Allen R, Ely Amanda L
Аннотация
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.
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.