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

Abstract

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
• DOI: https://doi.org/10.1080/08870446.2023.2231489
• Keywords: child, treatment burden, genetic algorithm, short-form, Caregiver, cystic fibrosis