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Development and validation of a short form psychometric tool assessing the caregiving Challenge of Living with Cystic Fibrosis (CLCF-SF) in a child.

McCray, Gareth; Hope, Holly F.; Glasscoe, Claire; Hill, Jonathan; Quittner, Alexandra; Southern, Kevin W.; Lancaster, Gillian A.; Hope, Holly F; Southern, Kevin W; Lancaster, Gillian A


Holly F. Hope

Claire Glasscoe

Alexandra Quittner

Kevin W. Southern

Gillian A. Lancaster

Holly F Hope

Kevin W Southern

Gillian A Lancaster


Caring for a child with cystic fibrosis (CF) is a rigorous daily commitment for caregivers and treatment burden is a major concern. We aimed to develop and validate a short form version of a 46-item tool assessing the Challenge of Living with Cystic Fibrosis (CLCF) for clinical or research use. A novel genetic algorithm based on 'evolving' a subset of items from a pre-specified set of criteria, was applied to optimise the tool, using data from 135 families. Internal reliability and validity were assessed; the latter compared scores to validated tests of parental well-being, markers of treatment burden, and disease severity. The 15-item CLCF-SF demonstrated very good internal consistency [Cronbach's alpha 0.82 (95%CI 0.78-0.87)]. Scores for convergent validity correlated with the Beck Depression Inventory (Rho = 0.48), State Trait Anxiety Inventory (STAI-State, Rho = 0.41; STAI-Trait, Rho = 0.43), Cystic Fibrosis Questionnaire-Revised, lung function (Rho = -0.37), caregiver treatment management (  = 0.48) and child treatment management (  = 0.45), and discriminated between unwell and well children with CF (Mean Difference 5.5, 95%CI 2.5-8.5,  < 0.001), and recent or no hospital admission (MD 3.6, 95%CI 0.25-6.95,  = 0.039). The CLCF-SF provides a robust 15-item tool for assessing the challenge of living with a child with CF.

Journal Article Type Article
Acceptance Date Jun 26, 2023
Online Publication Date Jul 5, 2023
Deposit Date Jul 31, 2023
Publicly Available Date Jul 31, 2023
Journal Psychology & health
Print ISSN 0887-0446
Electronic ISSN 1476-8321
Publisher Taylor and Francis
Peer Reviewed Peer Reviewed
Pages 1-23
Keywords child, treatment burden, genetic algorithm, short-form, Caregiver, cystic fibrosis


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