Quality-of-life in children and adolescents with cystic fibrosis managed in both regional outreach and cystic fibrosis center settings in Queensland

To assess the health-related quality-of-life (HRQOL) of children/adolescents with cystic fibrosis (CF) and compare HRQOL in children managed by cystic fibrosis outreach service (CFOS) with those treated in a cystic fibrosis center (CFC). To compare HRQOL of children with CF in Queensland with previously published HRQOL data from the United States and examine the relationship between HRQOL scores and pulmonary function. Study design: Participants were children/adolescents with CF and their parents managed by the Royal Children’s Hospital Queensland at a CFC or CFOS. Two HRQOL surveys were used: PedsQL™ and Cystic Fibrosis Questionnaire (CFQ). Results: There were 91 CFC and 71 CFOS participants with similar demographics. PedsQL™ total summary score was statistically higher in CFOS, P = .05. There was no significant difference in CFQ scores between groups. Queensland parents reported lower HRQOL for their children compared with US parents (P