Concordance between self-report and parent proxy health-related quality of life in children with Congenital Heart Disease

Abstract

Abstract

Objective:  Proxy reports are an essential format to measure some health-related outcomes where the patients are unable to complete the record forms and potentially beneficial when the caregiver’s perspective can complement the patient report. This study assesses the level of concordance in parent-rated and self-report measures of health-related quality

Method: The study was conducted on a cohort of children and adolescents diagnosed with Congenital Heart Disease(CHD) at the Faisalabad Institute of Cardiology (FIC), Punjab Pakistan. The 250 dyads participated in the study. Children with any other disability were excluded. PaedsQoL (cardiac module) self-report and parent proxy report was administered to the sample and data were analyzed using SPSS 21.

Results: Inter-Class Correlation Analysis (ICC) between parent and child report on health-related quality of life showed concordance on health-related (objective domain) but discordance on cognitive (subjective domains) subscales. Mean differences across child and parent reports were significant only for treatment adherence, apprehension, treatment anxiety, and cognitive problems followed by no difference in cardiac symptoms and communication problems.  Furthermore, maternal education, family income, and duration of illness negatively correlated with Paeds QoL scores.

Conclusion This study reveals that parents’ assessment of their child's HRQoL has fair to moderate agreement with the subject's self-report suggesting a cautious interpretation, especially in intervention studies.

Keywords: Concordance, health-related quality of life, Congenital Heart Disease, Parent report, Self-report