title: Poor agreement on health-related quality of life between children with congenital hand differences and their parents.
abstract: OBJECTIVE
  To determine agreement between children with congenital hand differences (CHDs) and their parents on health-related quality of life (HRQOL) and to explore whether characteristic variables were associated with this agreement on different domains of HRQOL.
  
  
  METHODS
  Survey.
  
  
  METHODS
  University hospital, outpatient clinic.
  
  
  METHODS
  Children with CHD (age range, 10-14 y; N=106).
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  Agreement on HRQOL was determined by comparing child self-reports and parent proxy-reports of the Pediatric Quality of Life Inventory 4.0 generic core scales, in Dutch. Agreement was examined both at group level and individual level.
  
  
  RESULTS
  On a group level, children scored the same as their parents on a scale of 0 to 100 (physical health, 89.1±14.1 vs 88.0±15.6; psychosocial health, 80.6±13.4 vs 79.0±14.5; and total HRQOL, 83.5±12.3 vs 82.0±13.6). On an individual level, however, scoring was subject to high variation, with children reporting both higher and lower scores than their parent proxy. There were no major determinants for agreement; we only found that agreement was higher on emotional functioning in children with more affected fingers and on social functioning in bilaterally involved children.
  
  
  CONCLUSIONS
  In terms of mean group scores, 10- to 14-year-old children with CHD agree with their parents or proxy on the child's HRQOL. However, on an individual level, they disagree; on some subdomains limits of agreement are as large as 30 points on the 0 to 100 scale. Therefore, care should be taken in cases where children are unable to complete the questionnaire in choosing the parents' score as a representative substitute for the child's score.
authors.affiliation: Department of Rehabilitation Medicine and Physical Therapy, Erasmus MC-University Medical Center Rotterdam, Rotterdam, The Netherlands. m.ardon@erasmusmc.nl
authors.forename: Monique S
authors.initials: MS
authors.lastname: Ardon
authors.forename: Ruud W
authors.initials: RW
authors.lastname: Selles
authors.forename: Marij E
authors.initials: ME
authors.lastname: Roebroeck
authors.forename: Steven E
authors.initials: SE
authors.lastname: Hovius
authors.forename: Henk J
authors.initials: HJ
authors.lastname: Stam
authors.forename: Wim G
authors.initials: WG
authors.lastname: Janssen
mesh_terms: D000293:Adolescent; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006228:Hand Deformities, Congenital / Q000523:psychology*; D006801:Humans; D016014:Linear Models; D008297:Male; D009426:Netherlands; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D011795:Surveys and Questionnaires