Publisher DOI: | 10.1186/s12955-016-0553-0 | Title: | Explaining parent-child (dis)agreement in generic and short stature-specific health-related quality of life reports : do family and social relationships matter? | Language: | English | Authors: | Quitmann, Julia ![]() Rohenkohl, Anja Sommer, Rachel Bullinger, Monika Silva, Neuza |
Keywords: | Extent and direction of parent-child discrepancies; Growthhormone deficiency; Idiopathic short stature; Parent-childdyadic approach; Parental burden; Quality of life; Socialsupport | Issue Date: | 21-Oct-2016 | Publisher: | BioMed Central | Journal or Series Name: | 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. |
URI: | https://hdl.handle.net/20.500.12738/17240 | ISSN: | 1477-7525 | Review status: | This version was peer reviewed (peer review) | Institute: | Universitätsklinikum Hamburg-Eppendorf | Type: | Article | Additional note: | article number: 150 (2016) |
Appears in Collections: | Publications without full text |
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