Caregiver Mental Health and Its Relation to Child and Adolescent Mental and Behavioral Health in the Era of Highly Effective Modulator Therapy for Cystic Fibrosis

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BACKGROUND: Elexacaftor/tezacaftor/ivacaftor (ETI) has led to marked improvements in physical health outcomes but inconsistent findings regarding changes in mental and behavioral health outcomes for youth with cystic fibrosis (YWCF) and their caregivers. OBJECTIVES: To describe the prevalence of mental/behavioral health symptoms in YWCF taking ETI and their caregivers, and to examine the association between caregiver and youth mental/behavioral health symptoms. METHOD: In this cross-sectional study, 118 YWCF (ages 7-17) and their caregivers from 11 U.S. CF centers participated. Standardized self-report and parent-proxy screening measures assessed symptoms of depression, anxiety, attention deficit hyperactivity disorder (ADHD), externalizing behaviors, and sleep disturbance. Descriptive statistics summarized prevalence and Spearman Rho correlations were used to analyze associations. RESULTS: The point prevalence of mild or moderate/severe depressive symptoms was 23.3% (95% CI: 16, 31) for caregivers, 27.1% (95% CI: 15, 40) for children (ages 7-12), and 28.6% (95% CI: 18, 39) for adolescents (ages 13-17). The point prevalence for mild or moderate/severe anxiety symptoms was 23.1% (95% CI: 15, 31) for caregivers, 31.3% (95% CI: 18, 44) for children, and 18.8% (95% CI: 10, 28) for adolescents. Some YWCF exceeded clinical cutoffs for sleep disturbance (29.8-35.0%), attention (11.4-14.9%), and externalizing behavior (5.7-8.5%). Caregiver mental health scores and child mental/behavioral health scores were positively correlated (ρ = 0.20 - 0.52, p's < 0.05). CONCLUSIONS: Though most YWCF and caregivers report few to no mental/behavioral health symptoms, many still report clinically elevated levels, suggesting the continued need to screen for mental health concerns in the evolving context of highly effective CF treatment. Our results also indicate that screening should expand to areas beyond anxiety and depression, such as sleep, as well as the possible need for developing family-based mental health care.

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