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.

• Authors: Claire Glasscoe, Holly F Hope, Gillian A Lancaster, Gareth McCray, Kiri West, Latifa Patel, Tulsi Patel, Jonathan Hill, Alexandra L Quittner, Kevin W Southern
• Journal: Psychology & health (Psychol Health) 2023 Sep-Oct Vol. 38 Issue 10 Pg. 1309-1344 ISSN: 1476-8321 [Electronic] England
• PMID: 35259034 (Publication Type: Journal Article)