Comparing parent and child reports of health-related quality of life and their relationship with leisure participation in children and adolescents with Cerebral Palsy

Abstract

The aim of this study was to examine the level of agreement between reports of health-related quality of life (HR-QoL) obtained from children and adolescents with cerebral palsy (CP) and their parents. We also examined the relationships between child and parent perception of the different domains of HR-QoL and participation dimensions. Sixty-nine children and adolescents with CP and their parents separately completed parallel forms of the KIDSCREEN questionnaire. The Spanish version of the Children's Assessment of Participation and Enjoyment (CAPE) was completed by the child/adolescent. Concordance between the children's and the parents' HR-QoL scores was analyzed via Pearson and intraclass correlations. Differences in means were tested using paired Student's t-tests. Chi-square tests were using to assess the incidence of personal variables in the agreement and disagreement of children-parents’ responses. The relationships between HR-QoL and leisure participation was confirmed with Pearson's correlation coefficients. Correlations between child and parent HR-QoL scores were small in 7 domains, medium in 2 and large in the Social Support & Peers domain.Children reported significantly better HR-QoL than their parents did. Participation was positively associated with specific domains of HR-QoL, but only weakly, and there were discrepancies between parent and child reports of HR-QoL. These findings provide interesting information about the importance of hearing the voices of children and adolescents with CP to promote HR-QoL and leisure participation.