This is a longitudinal, observational epidemiological study designed to estimate the prevalence of depression, anxiety, and behavior problems in children ages 18 months through 11 years with cystic fibrosis (CF).
Child with a diagnosis of Cystic fibrosis (CF) actively followed by the CF care team at a participating site
Child is age 18 months thru 11 years
English and/or Spanish speaking
Parent/legal guardian willing and able to give informed consent, and for minor participants ages 7 thru 11 years able to give assent.
Unable or unwilling to participate in study procedures, or at Site PI discretion.
Children with Cystic Fibrosis between 18 months and 11 years
Other
Prospective
Not listed
Prevalence of depression, anxiety, and behavioral problems in children with cystic fibrosis
Estimate the national prevalence of depression, anxiety, and behavioral problems among children with cystic fibrosis aged 18 months through 11 years using the Behavior Assessment System for Children, Third Edition (BASC-3). At the baseline assessment (Time 1), parents complete the age-appropriate BASC-3 Parent Rating Scale, and children aged 8-11 years complete the BASC-3 Self-Report of Personality. BASC-3 classifications of emotional and behavioral symptoms will be used to estimate the prevalence of clinically significant symptoms.
Diagnostic performance of brief behavioral and mental health screening instruments
Evaluate the diagnostic accuracy and clinical utility of the Pediatric Symptom Checklist (PSC-Preschool, PSC-17, and PSC-Y-17) and PROMIS short forms for anxiety, depressive symptoms, anger/irritability, sleep disturbance, cognitive functioning, flexibility, and persistence by comparing their performance with BASC-3 at baseline.
Longitudinal changes in child mental health symptoms
Assess changes in parent-reported and child self-reported mental health symptoms over three study assessments using PSC and PROMIS measures. BASC-3 is administered only at the first assessment.
Cystic fibrosis-specific health-related quality of life
Assess CF-specific health-related quality of life using age-appropriate versions of the Cystic Fibrosis Questionnaire-Revised (CFQ-R). Parent-proxy and child self-report versions are administered according to participant age, with the Preschool Pictorial CFQ-R administered once for eligible children.
Parent symptoms of depression and anxiety
Assess parent mental health using the Patient Health Questionnaire-8 (PHQ-8) and Generalized Anxiety Disorder-7 (GAD-7) at each assessment.
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State University of New York at Buffalo
Lead sponsor
Cystic Fibrosis Foundation
Collaborator
Brown University
Collaborator
