Original articleQuality-of-life in children and adolescents with cystic fibrosis managed in both regional outreach and cystic fibrosis center settings in queensland
Section snippets
Methods
The participants were children and adolescents, and their parents, living in Queensland and Northern New South Wales who were treated by the Royal Children’s Hospital CF team in a tertiary (CFC) or outreach setting (CFOS). Children were between 2 and 19 years of age and had a proven diagnosis of CF based on genetic and/or sweat testing and compatible clinical features. Geographical location was categorized according to the Accessibility/Remoteness Index of Australia (ARIA). 14 ARIA
Results
The overall survey completion rate was 75% (162 of 217 participants). There was a higher completion rate in the CFC population (88.4%, 91 of 103) compared with the CFOS population (62.28%, 71 of 114), P <.001. More females (53.7%) than males responded, P = .01, but there was no difference between genotype of respondents and nonrespondents. Of the 46 teens, participation was significantly higher for the CFC (24 of 27, 89.0%) compared with those from the CFOS (10 of 19, 53.0%), P = .006. There
Discussion
We report the quality-of-life of children with CF treated in both tertiary and outreach settings and provide an important insight on quality-of-life for children and adolescents with CF in Queensland. Interestingly, 8- to 12-year-olds tended to report a poorer HRQOL on the Psychosocial, Social, Emotional, and School domains compared with younger children and teens on the PedsQL™. Both the child self-report total scores and parent proxy-report data for this age group were similar to values
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