Development and preliminary validation of the challenges of living with cystic fibrosis (CLCF) questionnaire: a 46-item measure of treatment burden for parent/carers of children with CF
C. Glasscoe, Holly Hope, Gillian Lancaster, Gareth McCray, Kiri West, Latifa Patel, Tulsi Patel, Jonathan Hill, Alexandra L. Quittner, Kevin W Southern
Abstract
OBJECTIVE: Treatments for cystic fibrosis (CF) are complex, labour-intensive, and perceived as highly burdensome by caregivers of children with CF. An instrument assessing burden of care is needed. DESIGN: A stepwise, qualitative design was used to create the CLCF with caregiver focus groups, participant researchers, a multidisciplinary professional panel, and cognitive interviews. MAIN OUTCOME MEASURES: ). RESULTS: = 0.002). CONCLUSIONS: The CLCF, developed in partnership with parents/caregivers and CF professionals, is a timely, disease-specific burden measure for clinical research.
Topics & Concepts
Cronbach's alphaClinical psychologyDiscriminant validityPsychologyCystic fibrosisConvergent validityScale (ratio)Caregiver burdenPsychometricsReliability (semiconductor)Focus groupInternal consistencyMedicineDiseaseDementiaBusinessQuantum mechanicsPathologyMarketingPower (physics)Internal medicinePhysicsCystic Fibrosis Research AdvancesFamily and Disability Support Research