title: Health-related quality of life in children and adolescents with cystic fibrosis: convergent validity with parent-reports and objective measures of pulmonary health.
abstract: OBJECTIVE
  This study examined the convergent validity of health-related quality of life (HRQOL) reported by patients with cystic fibrosis compared with their parents' reports and objective pulmonary measures across 3 time points.
  
  
  METHODS
  Ninety-two children (8-13 years) and adolescents (14-18 years) with cystic fibrosis and their parents completed Cystic Fibrosis Questionnaires to examine concordance with Wisconsin chest x-ray (WCXR) scores and pulmonary function tests, for example, forced expiratory volume at 1 second (FEV1), and parent-child/adolescent concordance across multiple HRQOL domains. Concordance was analyzed relative to patient age and gender.
  
  
  RESULTS
  Parent-reports were closely aligned with WCXR scores, whereas patient reports were more closely aligned with FEV1. Adolescents and parents of both age groups had more HRQOL domains concordant with pulmonary health measures than did child self-reports. Parent-child concordance was inversely related to child age, particularly with male adolescents. Children generally reported better HRQOL than parents. Male adolescents and their parents were more likely to have significantly discordant HRQOL scores than female adolescents and their parents. Male and female adolescents reported higher HRQOL than their parents reported for all but vitality and health perception domains. Younger male children showed concordance with their parents on 5 of 7 domains.
  
  
  CONCLUSIONS
  Parent-child/adolescent discordance on HRQOL was consistent with normative child development expectations. Findings underscore the value of enlisting perspectives from parents as well as children regarding HRQOL.
authors.affiliation: University of Wisconsin School of Nursing, Madison, WI, USA. atluczek@wisc.edu
authors.forename: Audrey
authors.initials: A
authors.lastname: Tluczek
authors.forename: Tara
authors.initials: T
authors.lastname: Becker
authors.forename: Adam
authors.initials: A
authors.lastname: Grieve
authors.forename: Anita
authors.initials: A
authors.lastname: Laxova
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Rock
authors.forename: William M
authors.initials: WM
authors.lastname: Gershan
authors.forename: Christopher G
authors.initials: CG
authors.lastname: Green
authors.forename: Philip M
authors.initials: PM
authors.lastname: Farrell
mesh_terms: D000293:Adolescent; D002648:Child; D003550:Cystic Fibrosis / Q000000981:diagnostic imaging / Q000503:physiopathology / Q000523:psychology*; D005260:Female; D005541:Forced Expiratory Volume; D006801:Humans; D008168:Lung / Q000000981:diagnostic imaging / Q000503:physiopathology; D008297:Male; D010290:Parents / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D011859:Radiography; D015203:Reproducibility of Results; D012129:Respiratory Function Tests; D057566:Self Report; D011795:Surveys and Questionnaires