title: Quality of life of children with cystic fibrosis.
abstract: OBJECTIVE
  To review health-related quality of life (QOL) and associated issues and to describe a study investigating "Child Health Questionnaire" (CHQ) scores in relationship to newborn screening (NBS) for cystic fibrosis (CF) and markers of disease severity.
  
  
  METHODS
  A total of 36 patients from 10-15.5 years old who were enrolled in the screened or control group of the Wisconsin CF Neonatal Screening Project completed the CHQ. Scale scores comprised the dependent variables. Independent variables included study group and measures of disease severity. Analyses included Fisher's exact, 2-sample Wilcoxon, and t tests.
  
  
  RESULTS
  QOL did not differ significantly between the screened and control groups for any of the scales. None of the comparisons of CHQ scale scores across measures of disease severity were significant in this small sample, but the CHQ and power were limiting.
  
  
  CONCLUSIONS
  Our results did not demonstrate a benefit of CF NBS on QOL; however, the CHQ may not be adequately sensitive to QOL in children with CF with disease severity comparable to our sample. The Cystic Fibrosis Questionnaire, a recently validated CF-specific QOL measure for pediatric samples, is likely to provide a more informative evaluation of the effects of CF NBS on patients' QOL.
authors.affiliation: Department of Biostatistics and Medical Informatics, Madison, WI 53792, USA. koscik@biostat.wisc.edu
authors.forename: Rebecca L
authors.initials: RL
authors.lastname: Koscik
authors.forename: Jeffrey A
authors.initials: JA
authors.lastname: Douglas
authors.forename: Kathleen
authors.initials: K
authors.lastname: Zaremba
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Rock
authors.forename: Mark L
authors.initials: ML
authors.lastname: Splaingard
authors.forename: Anita
authors.initials: A
authors.lastname: Laxova
authors.forename: Philip M
authors.initials: PM
authors.lastname: Farrell
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D015362:Child Nutrition Disorders / Q000209:etiology; D002669:Child Welfare; D003550:Cystic Fibrosis / Q000150:complications / Q000175:diagnosis* / Q000523:psychology*; D042241:Early Diagnosis; D005260:Female; D006304:Health Status; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D015997:Neonatal Screening / Q000592:standards; D000297:Psychology, Adolescent; D002666:Psychology, Child; D011788:Quality of Life / Q000523:psychology*; D016032:Randomized Controlled Trials as Topic; D012141:Respiratory Tract Infections / Q000209:etiology; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D014922:Wisconsin