title: Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance.
abstract: BACKGROUND
  Although parent-proxy reports of health-related quality of life (HRQOL) are only moderately correlated with child reported HRQOL, it remains unknown why these scores differ. The aim of this study was to use a qualitative methodology to examine why parents and children report different levels of HRQOL.
  
  
  METHODS
  The sample consisted of 15 parent-child pairs. A think-aloud technique was used where parents and children were given a generic HRQOL instrument (KIDSCREEN) and instructed to share their thoughts with the interviewer. Qualitative analyses were conducted to assess whether parents and children base their answer on different experiences or reasoning, have different response styles, or interpret the items differently.
  
  
  RESULTS
  There was discordance between parents and children, in terms of rating scale and in terms of the reasoning for their answer. Children tended to have different response styles to parents, where for example, children tended to provide extreme scores (highest or lowest score) and base their response on one single example, more than parents. Parents and children interpreted the meaning of the items very similarly.
  
  
  CONCLUSIONS
  This study provides evidence to suggest that discordance among parent-child pairs on KIDSCREEN scores may be as a result of different reasoning and different response styles, rather than interpretation of items. These findings have important implications when parent-proxy reported HRQOL is used to guide clinical/treatment decisions.
authors.affiliation: School of Health and Social Development, Faculty of Health, Medicine, Nursing and Behavioural Sciences, Deakin University, Burwood, Victoria, 3125, Australia. elise.davis@deakin.edu.au
authors.forename: Elise
authors.initials: E
authors.lastname: Davis
authors.forename: Caroline
authors.initials: C
authors.lastname: Nicolas
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Waters
authors.forename: Kay
authors.initials: K
authors.lastname: Cook
authors.forename: Lisa
authors.initials: L
authors.lastname: Gibbs
authors.forename: Angela
authors.initials: A
authors.lastname: Gosch
authors.forename: Ulrike
authors.initials: U
authors.lastname: Ravens-Sieberer
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002668:Child Rearing / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010865:Pilot Projects; D019727:Proxy; D002666:Psychology, Child; D011594:Psychometrics / Q000295:instrumentation; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D012650:Self Disclosure; D011795:Surveys and Questionnaires; D014739:Victoria