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Title: Explaining parent-child (dis)agreement in generic and short stature-specific health-related quality of life reports: do family and social relationships matter?
Authors: Quitmann, Julia 
Rohenkohl, Anja 
Sommer, Rachel 
Bullinger, Monika 
Silva, Neuza 
Keywords: Quality of Life; Extent and direction of parent-child discrepancies; Parent-child dyadic approach; Parental burden; Growth hormone deficiency; Idiopathic short stature; Social support
Issue Date: 2016
Citation: Quitmann, J., Rohenkohl, A., Sommer, R., Bullinger, M., & Silva, N. (2016). Explaining parent-child (dis)agreement in generic and short stature-specific health-related quality of life reports: Do family and social relationships matter? Health and Quality of Life Outcomes, 14, 150. doi:10.1186/s12955-016-0553-0
Serial title, monograph or event: Health and Quality of Life Outcomes
Volume: 14
Issue: 1
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.
DOI: 10.1186/s12955-016-0553-0
Rights: openAccess
Appears in Collections:FPCEUC - Artigos em Revistas Internacionais

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