title: Quality-of-life in children and adolescents with cystic fibrosis managed in both regional outreach and cystic fibrosis center settings in Queensland.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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<.01) despite similar pulmonary function. Declining pulmonary function correlated with worse CFQ scores in adolescents, P<.05.
  
  
  CONCLUSIONS
  Children living in regional Queensland reported as good as or slightly better HRQOL compared with children attending a CFC. Parent proxy HRQOL scores were generally low suggesting a reduced perception of HRQOL by parents for their children.
authors.affiliation: Royal Children's Hospital, and the School of Population Health, University of Queensland, Brisbane, Queensland, Australia. Clare_Thomas@health.qld.gov.au
authors.forename: Clare
authors.initials: C
authors.lastname: Thomas
authors.forename: Penny
authors.initials: P
authors.lastname: Mitchell
authors.forename: Peter
authors.initials: P
authors.lastname: O'Rourke
authors.forename: Claire
authors.initials: C
authors.lastname: Wainwright
mesh_terms: D000293:Adolescent; D002648:Child; D002662:Child Health Services; D002675:Child, Preschool; D003159:Community-Institutional Relations; D003550:Cystic Fibrosis / Q000534:rehabilitation*; D006304:Health Status; D006801:Humans; D008507:Medically Underserved Area; D017063:Outcome Assessment, Health Care; D011788:Quality of Life; D011793:Queensland; D012119:Respiration; D014481:United States