Health related quality of life outcomes for children in the Australasian Cystic Fibrosis Bronchoalveolar Lavage study

Abstract

Objectives: To measure HRQOL outcomes in participants and their caregivers. Methods: HRQOL data were collected at study completion at 5yrs. Final outcomes included 2 HRQOL instruments (PedsQL™4.0 and CFQ-R English V2.0), BAL, HRCT chest scan, and spirometry. To investigate differences in HRQOL between the study groups (BAL and Standard therapy), two-sample t-tests were performed on all 8 child CFQ-R domains, 11 parent CFQ-R domains, 4 PedsQL domains, psychosocial score and total score for children and caregivers. Paired t-tests were run on the PedsQL domains comparing the child and caregiver responses. Linear regressions were performed to look at associations between clinical outcomes and HRQOL scores. Results: There was no evidence of a difference in HRQOL between study groups across any domains. Caregiver and child responses were similar for the PedsQL physical domain (mean 83 vs 81, P = 0.22) but differences were found for the social (89 vs 79, P < 0.001) and school (81 vs 74, P = 0.001) domains. PedsQL results for both study groups were comparable to healthy populations of the same age group (Total scale score 79/82 vs 68.78 for Parents (Caregivers), 79/78 vs 75.45 for Children (Ferreira et al. Health and Quality of Life Outcomes 2014)). There was a positive association between FEV1 at 5yrs and parent PedsQL score and a negative association between the number of pulmonary exacerbations and those requiring admission and parent PedsQL score. Conclusion: Young children and their caregivers report overall HRQOL comparable with a healthy population although pulmonary exacerbations and respiratory status impact parent HRQOL. However, in-depth comparisons of parent and child HRQOL suggest current self-report measures may have limitations with children in this age group.L20019763702019-09-05 <br />