Youth with CF face mental health issues despite taking approved treatment
Caregiver anxiety, depression associated with their child's behavioral symptoms
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Children and adolescents with cystic fibrosis (CF) continue to experience mental health and behavioral concerns despite treatment with Trikafta (elexacaftor/tezacaftor/ivacaftor), according to a recent study.
Caregiver anxiety and depression were also found to be associated with mental health and behavioral symptoms in their children, highlighting the importance of considering caregiver mental health in CF care.
“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,” researchers wrote.
The study, “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,” was published in Pediatric Pulmonology.
Depressive symptoms detected in nearly 30% of youth
CF is caused by mutations in the CFTR gene, which result in an absent or dysfunctional protein of the same name. This leads to the accumulation of thick, sticky mucus in various organs, causing most CF symptoms.
Children and adolescents with CF, as well as their caregivers, may also face mental health issues, including anxiety and depression. While highly effective CFTR modulator therapies such as Trikafta have substantially improved the physical health of youth with CF, their effects on mental health issues in both patients and their caregivers remain less clear.
To learn more, researchers analyzed data from the Your ETI study, a U.S. multicenter research project that evaluated treatment adherence in people with CF taking Trikafta.
Between March and July 2024, 118 caregiver‐youth pairs were included in the analysis. Among patients, 48 were children (mean age 10.5 years, 63.8% boys) and 70 were adolescents (15.3 years, 51.4% girls). Children were taking Trikafta for a mean of 2.7 years, compared with 3.4 years for adolescents. In both groups, more than 85% of caregivers were working part-time or full-time, and more than 70% were living with a partner.
Anxiety symptoms were present in 31.3% of children and 18.8% of adolescents, while depressive symptoms were detected in 27.1% of children and 28.6% of adolescents. Among caregivers, about 23% had anxiety or depressive symptoms.
Despite these findings, mean scores for children, adolescents, and caregivers remained within the average, or nonclinical, range across all measures.
“Though most [youth with CF] 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,” the team wrote.
Children’s sleep issues a big concern for caregivers
Sleep problems emerged as a particularly important concern among caregivers. Half of the adolescents had scores above the clinical cutoff for sleep disturbance, while nearly 30% of children met the threshold.
Clinically significant attention difficulties and externalizing behaviors, which can include hyperactivity, conduct problems, and disruptive behaviors, were also reported in several participants from both age groups.
Caregivers’ mental health was associated with their children’s symptoms. Anxiety symptoms in caregivers were significantly associated with children’s depression, anxiety, and sleep problems. Also, depressive symptoms in children with CF were moderately associated with depressive symptoms in their caregivers.
Ideally, practice guidelines will widen in the future to extend to children younger than age 12 and to cover behavioral concerns (e.g., attention problems, sleep disturbance) beyond screening for anxiety and depression.
Among adolescents, symptoms of depression in caregivers were weakly but significantly associated with all mental and behavioral health measures assessed. Caregiver anxiety symptoms were also associated with adolescents’ anxiety, attention problems, and sleep issues.
According to the researchers, these results support broadening mental and behavioral health screening in CF care.
“Ideally, practice guidelines will widen in the future to extend to children younger than age 12 and to cover behavioral concerns (e.g., attention problems, sleep disturbance) beyond screening for anxiety and depression,” they wrote.
The team further noted study limitations, such as having a group of participants with little diversity and with no relevant lung function impairment, which warrants caution against extrapolating conclusions to the overall CF patient population. Also, the findings do not represent CF youth “who are ineligible for, choose not to take, or stopped taking [Trikafta] (e.g., due to adverse side effects),” the scientists wrote.
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