Quality of Life in Families of Children with Congenital Heart Disease

Within a family perspective on quality of life (QL) with congenital heart disease, the study investigates parental QL, and patients’ health-related QL as reported by themselves and by their parents. We examined the hypotheses that parental QL moderates the parental proxy reports. Sixty-nine patients (7–20 years, 61% male) and their caregivers participated in a computer-assisted QL-assessment. Children’s self-rated and proxy-rated QL correlated moderately, with the highest intra-class correlation on the subscale psychological well-being/functioning (r = 0.61; p < 0.001), less convergence in physical well-being/functioning (r = 0.49; p< 0.001) and absent correlation in the evaluation of intra-family relationships. Parental QL was correlated both with the children’s self-rated QL (r = 0.42; p< 0.05) and children’s parent-rated QL (r = 0.60; p< 0.001). Support for the moderator hypotheses is indicated by the results of regression analyses demonstrating a significant interaction effect of parental QL and patients’ self-reported QL in predicting parental proxy reports on their children’s QL. Post-hoc tests reveal that parents with low own QL agree significantly more with their children than parents with high QL. Parent–child agreement on the children’s QL is limited and reflects complementary subjective viewpoints. Psychosocial interventions should be family-focused and provide support for patients’ and their caregivers’ QL.