Cross-sectional study of 118 youth with cystic fibrosis (YWCF, ages 7–17) on elexacaftor/tezacaftor/ivacaftor (ETI) and their caregivers at 11 U.S. CF centers, assessing prevalence of depression, anxiety, ADHD, externalizing behaviors, and sleep disturbance, plus caregiver–child symptom associations.
Clinically elevated depressive symptoms were found in 23.3% of caregivers, 27.1% of children (7–12), and 28.6% of adolescents (13–17); anxiety symptoms in 23.1%, 31.3%, and 18.8%, respectively. Sleep disturbance exceeded clinical cutoffs in 29.8–35.0% of YWCF. Caregiver and child mental/behavioral health scores were positively correlated (ρ = 0.20–0.52, all p < 0.05).
Cross-sectional design prevents causal inference. Single time-point prevalence may not reflect longitudinal trends after ETI initiation. No comparison group without ETI or without CF was included.
Even with highly effective ETI therapy, roughly 1 in 4 YWCF and caregivers still screen positive for depression or anxiety — and nearly 1 in 3 YWCF have clinically significant sleep problems. Clinicians should screen beyond anxiety and depression to include sleep, attention, and behavior, and consider family-based mental health approaches given the strong caregiver–child correlation.
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