title: The level of agreement between child self-reports and parent proxy-reports of health-related quality of life in boys with Duchenne muscular dystrophy.
abstract: OBJECTIVE
  To investigate the level of agreement between child self-reports and parent proxy-reports of the health-related quality of life (HRQoL) in boys with Duchenne muscular dystrophy (DMD) using both classical test theory (CTT) and Rasch analysis.
  
  
  METHODS
  A total of 63 boys with DMD and their parents completed the pediatric quality of life inventory version 4.0 child self-report and parent proxy-report of HRQoL, respectively. The data were analyzed using both the CTT (scale-score level) and Rasch analysis (item-level).
  
  
  RESULTS
  The intraclass correlation coefficient (ICC, scale-score level) between children and parents showed good to moderate agreement, although parents consistently underestimated their child HRQoL. In Rasch analysis (item-level), 1 out of 8 items was significantly different between children and parents in the physical health scale. Also, 3 out of 15 items were significantly different between those two groups in the psychosocial health scale.
  
  
  CONCLUSIONS
  By applying both scale-score and item-level analyses, our study seeks to broaden the understanding of the discrepancy of the ratings between child self-reports and parent proxy-reports. The findings could provide further information about the decision-making process when selecting therapy and care programs.
authors.affiliation: Department of Occupational Therapy, University of Florida, PO BOX 100164, Gainesville, FL, 32610-0164, USA, yoonjeong@phhp.ufl.edu.
authors.forename: Yoonjeong
authors.initials: Y
authors.lastname: Lim
authors.forename: Craig
authors.initials: C
authors.lastname: Velozo
authors.forename: Roxanna M
authors.initials: RM
authors.lastname: Bendixen
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006305:Health Status Indicators; D006306:Health Surveys; D006801:Humans; D008297:Male; D015233:Models, Statistical; D020388:Muscular Dystrophy, Duchenne / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D019727:Proxy / Q000523:psychology*; D011594:Psychometrics; D011788:Quality of Life; D057566:Self Report