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

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.

Citation

Glasscoe, C., Hope, H. F., Lancaster, G. A., McCray, G., West, K., Patel, L., Patel, T., Hill, J., Quittner, A. L., & Southern, K. W. (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 and Health, 38(10), 1309-1344. https://doi.org/10.1080/08870446.2021.2013483

• Journal Article Type: Article
• Acceptance Date: Nov 28, 2021
• Online Publication Date: Mar 8, 2022
• Publication Date: Oct 3, 2023
• Publicly Available Date: May 30, 2023
• Journal: Psychology & Health
• Print ISSN: 0887-0446
• Electronic ISSN: 1476-8321
• Publisher: Routledge
• Volume: 38
• Issue: 10
• Pages: 1309-1344
• DOI: https://doi.org/10.1080/08870446.2021.2013483
• Keywords: cystic fibrosis; measure development; children; caregivers; treatment burden; treatments; 222
• Public URL: https://keele-repository.worktribe.com/output/422672
• Publisher URL: https://www.tandfonline.com/doi/full/10.1080/08870446.2021.2013483