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.