Though most youth with cystic fibrosis (YWCF) taking ETI and their 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.
Approximately one-quarter of caregivers of youth with cystic fibrosis on ETI reported clinically significant depressive symptoms.
Roughly one-quarter to one-third of youth with cystic fibrosis on ETI reported clinically significant depressive symptoms.
Anxiety symptoms were prevalent in approximately one-fifth to one-third of caregivers and youth with cystic fibrosis on ETI.
A substantial proportion of youth with cystic fibrosis on ETI exceeded clinical cutoffs for sleep disturbance.
Clinically elevated attention and externalizing behavior symptoms were present in a subset of youth with cystic fibrosis on ETI.
Caregiver mental health scores and child/adolescent mental and behavioral health scores were positively correlated across multiple symptom domains.
The study found inconsistent findings in the existing literature regarding changes in mental and behavioral health outcomes for youth with CF and caregivers following ETI.
This research suggests that even though a highly effective cystic fibrosis medication called ETI (elexacaftor/tezacaftor/ivacaftor) has dramatically improved the physical health of children and teenagers with cystic fibrosis, mental health challenges remain common for both these young patients and the adults who care for them. In a study of 118 youth with cystic fibrosis (ages 7-17) and their caregivers from 11 U.S. clinics, roughly one-quarter to one-third of all groups — caregivers, children, and adolescents — reported meaningful levels of depression or anxiety. Additionally, nearly a third of youth had clinically significant sleep problems, and smaller but notable percentages had concerns related to attention and behavior. The study also found that when caregivers reported higher levels of mental health symptoms, the youth in their care tended to report higher symptoms as well, across depression, anxiety, sleep, attention, and behavior. These correlations (ranging from moderate to moderately strong, ρ = 0.20–0.52) held true across all measured domains. This suggests that the mental wellbeing of caregivers and the children they care for are meaningfully linked. This research suggests that even with powerful new physical treatments available, routine mental health screening should continue for both youth with cystic fibrosis and their caregivers. The findings also indicate that screening should go beyond just depression and anxiety to include sleep problems and behavioral concerns. The connection between caregiver and child mental health points to the potential value of family-centered approaches to mental health care in cystic fibrosis treatment programs.
Duncan C, von Isenburg M, Green A, Ford C, Pucci A, Muther E, et al.. (2026). 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.. Pediatric pulmonology. https://doi.org/10.1002/ppul.71794