Quality of life in young people with cystic fibrosis: effects of hospitalization, age and gender, and differences in parent/child perceptions

Abstract

Background: The Cystic Fibrosis Questionnaire-Revised version (CFQ-R) was used to evaluate age/gender effects on quality of life (QOL) in Australian young people with cystic fibrosis (CF) who were inpatients/outpatients aged 6-18 years. Parent/child agreement was also examined.

Method: The CFQ-R was completed by 18 outpatients, and 15 inpatients at admission for an acute pulmonary exacerbation to a tertiary hospital, Brisbane, Australia, as well as by parents of those aged 6-13 years.

Results: Inpatients scored significantly lower than outpatients for the CFQ-R domains 'emotional state', 'social', 'body image' and 'respiratory symptoms'. Young people aged 6-13 years scored significantly better than those aged 14-18 years for 'emotional state', 'body image' and 'treatment burden'. Women perceived less 'treatment burden' than did men. Young people aged 6-13 years perceived less 'treatment burden' than did their parents. A significant interaction occurred between child/parent report and gender for 'emotional state' and 'eating disturbances'.

Conclusion: The CFQ-R found differences between inpatients and outpatients and between younger and older paediatric patients with CF, and between parent and child perceptions of QOL.