Agreement Between Child Self-Report With Parent Proxy Report on the Quality of Life of Children With Medical Complexity: A Cross-Sectional Study

ObjectiveThis is the first study to investigate the agreement between children's self-reports and parents' proxy reports on the quality of life (QoL) of children with medical complexity in the Chinese context. We further examined if there were differences in the concordance between children's self-reports and parents' proxy reports.MethodsA cross-sectional study of 113 parent-child dyads was conducted on parents and their children aged 10-18 years with a diagnosis of medical complexity. The intra-class correlation coefficients between the scores of children and parents were excellent in total PedsQL and physical functioning, good in school functioning, and fair in social functioning and emotional functioning.ResultsChildren rated themselves better than their parents for emotional, social, school, and physical functioning. Discordance between the emotional and social components was observed from parent-reported and child-reported. There are some discrepancies in interpretation on pediatric QoL between children with medical complexity and their parents.ConclusionThe study suggested both parents and children's voices should be taken into account during health assessments and health-decision making to ensure tailor-made and appropriate nursing care is provided to the CMC.