title: Explaining parent-child (dis)agreement in generic and short stature-specific health-related quality of life reports: do family and social relationships matter?
abstract: BACKGROUND
  In the context of health-related quality of life (HrQoL) assessment in pediatric short stature, the present study aimed to examine the levels of agreement/disagreement between parents' and children's reports of generic and condition-specific HrQoL, and to identify socio-demographic, clinical and psychosocial variables associated with the extent and direction of parent-child discrepancies.
  
  
  METHODS
  This study was part of the retest phase of the QoLISSY project, which was a multicenter study conducted simultaneously in France, Germany, Spain, Sweden and UK. The sample comprised 137 dyads of children/adolescents between 8 and 18 years of age, diagnosed with growth hormone deficiency (GHD) or idiopathic short stature (ISS), and one of their parents. The participants completed child- and parent-reported questionnaires on generic (KIDSCREEN-10 Index) and condition-specific HrQoL (QoLISSY Core Module). Children/adolescents also reported on social support (Oslo 3-items Social Support Scale) and parents assessed the parent-child relationships (Parental Role subscale of the Social Adjustment Scale) and burden of short stature on parents (QoLISSY- additional module).
  
  
  RESULTS
  The parent-child agreement on reported HrQoL was strong (intraclass correlation coefficients between .59 and .80). The rates of parent-child discrepancies were 61.5 % for generic and 35.2 % for condition-specific HrQoL, with the parents being more prone to report lower generic (42.3 %) and condition-specific HrQoL (23.7 %) than their children. The extent of discrepancies was better explained by family and social relationships than by clinical and socio-demographic variables: poorer parent-child relationships and better children's social support were associated with larger discrepancies in generic HrQoL, while more parental burden was associated with larger discrepancies in condition-specific HrQoL reports. Regarding the direction of discrepancies, higher parental burden was significantly associated with parents' underrating, and better children's social support was significantly associated with parents' overrating of condition-specific HrQoL.
  
  
  CONCLUSIONS
  Routine assessment of pediatric HrQoL in healthcare and research contexts should include child- and parent-reported data as complementary sources of information, and also consider the family and social context.
authors: Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 D, 20246, Hamburg, Germany. j.quitmann@uke.de.
authors: Julia
authors: http://orcid.org/0000-0002-0876-4211
authors: J
authors: Quitmann
authors: Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 D, 20246, Hamburg, Germany.
authors: Anja
authors: A
authors: Rohenkohl
authors: Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 D, 20246, Hamburg, Germany.
authors: Rachel
authors: R
authors: Sommer
authors: Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 D, 20246, Hamburg, Germany.
authors: Monika
authors: M
authors: Bullinger
authors: Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 D, 20246, Hamburg, Germany.|Cognitive and Behavioural Center for Research and Intervention, Faculty of Psychology and Educational Sciences of the University of Coimbra, Rua do Colégio Novo, 3001-802, Coimbra, Portugal.
authors: Neuza
authors: N
authors: Silva
mesh_terms: D000293:Adolescent; D000328:Adult; D001827:Body Height; D002648:Child; D002675:Child, Preschool; D004392:Dwarfism / Q000523:psychology*; D005060:Europe / Q000453:epidemiology; D005260:Female; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: Extent and direction of parent-child discrepancies; Growth hormone deficiency; Idiopathic short stature; Parent-child dyadic approach; Parental burden; Quality of life; Social support