Assessing the responsiveness of the "Challenge of Living with Cystic Fibrosis" questionnaire to change in clinical condition

Dyer, Kiri
Assessing the responsiveness of the "Challenge of Living with Cystic Fibrosis" questionnaire to change in clinical condition. Master of Philosophy thesis, University of Liverpool.

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Background Cystic Fibrosis is a chronic, life shortening genetic disorder requiring a demanding daily treatment routine to manage, which intensifies during periods of pulmonary exacerbation. Parents are most often the primary carers of children with CF, and so, are responsible for handling the complex demands of the treatment regimen. They are, therefore, are at risk of experiencing caregiver burden, which may be exacerbated when their child becomes unwell. Aim To assess the responsiveness of the Challenge of Living with Cystic Fibrosis Questionnaire (CLCF), a new tool designed to estimate the time and effort involved in caring for a child with CF, to change in a child’s clinical condition, and as a result, its applicability in the clinical setting. Method N=13 parents of children with CF aged ≤13, who were at least one year post diagnosis, completed the CLCF during a period of wellness and a period of pulmonary exacerbation. The number of minutes per day undertaking treatment tasks and the average effort expended in treatment tasks was compared at the two time points. Results There was a correlation between the within person difference in minutes per day and the within person difference in average effort (p=0.024), demonstrating a relationship between the amount of time spent in treatment tasks and the effort taken to complete them. There was a trend for parents to spend a greater amount of time on treatments during the period when their child were unwell compared to when they were well, with a median within person difference of 53 minutes, but this did not reach statistical significance (p=0.07). There was no difference in the average effort expended on treatments between the two time points. These results should be interpreted with caution due to the small sample size. Conclusions This has been a valuable pilot study, demonstrating the ability of the CLCF to collect clinically meaningful data, and in part, demonstrated the responsiveness of the CLCF. The CLCF promises to be a useful clinical tool, however, further work is required to definitively establish the clinical relevance of the CLCF, and confirm the measure’s validity and reliability. It has also provided data on the amount of time parents in this study population spent on treatment tasks for their child. This is of particular importance given the expanding number or treatments available for CF, and the time taken for parents to provide these should be considered when making treatment decisions

Item Type: Thesis (Master of Philosophy)
Additional Information: Date: 2010-05 (completed)
Divisions: Faculty of Health and Life Sciences
Depositing User: Symplectic Admin
Date Deposited: 22 May 2012 09:40
Last Modified: 16 Dec 2022 04:33
DOI: 10.17638/00001325