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

Glasscoe, Claire, Hope, Holly F, Lancaster, Gillian A, McCray, Gareth, West, Kiri, Patel, Latifa, Patel, Tulsi, Hill, Jonathan, Quittner, Alexandra L and Southern, Kevin W ORCID: 0000-0001-6516-9083 (2023) 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 PSYCHOLOGY & HEALTH, 38 (10). pp. 1309-1344. ISSN 0887-0446, 1476-8321

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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: Preliminary psychometric analyses evaluated the reliability and convergent validity of the CLCF scores. Cronbach’s alpha assessed internal consistency and t-tests examined test-retest reliability. Correlations measured convergence between the Treatment Burden scale of the Cystic Fibrosis Questionnaire-Revised (CFQ-R) and the CLCF. Discriminant validity was assessed by comparing CLCF scores in one vs two-parent families, across ages, and in children with vs without Pseudomonas aeruginosa (PA). Results: Six Challenge subscales emerged from the qualitative data and the professional panel constructed a scoresheet estimating the Time and Effort required for treatments. Internal consistency and test-retest reliability were adequate. Good convergence was found between the Total Challenge score and Treatment Burden on the CFQ-R (r=-0.49, p = 0.02, n = 31). A recent PA infection signalled higher Total Challenge for caregivers (F(23)11.72, p = 0.002). Conclusions: The CLCF, developed in partnership with parents/caregivers and CF professionals, is a timely, disease-specific burden measure for clinical research.

Item Type:	Article
Uncontrolled Keywords:	cystic fibrosis, measure development, children, caregivers, treatment burden, treatments, 2226
Divisions:	Faculty of Health & Life Sciences Faculty of Health & Life Sciences > Inst. Life Courses & Medical Sciences
Depositing User:	Symplectic Admin
Date Deposited:	20 May 2022 12:51
Last Modified:	16 Jun 2026 10:19
DOI:	10.1080/08870446.2021.2013483
Open Access URL:	https://www.tandfonline.com/doi/full/10.1080/08870...
Related Websites:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3152376
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