To describe the relationship between health-related quality of life (HRQL) as measured by utility when elicited from parents and their children with chronic illness.
We enrolled families of children admitted for cancer chemotherapy and those attending outpatient rheumatology, hemophilia and bone marrow transplantation clinics. Children in grade 6 or higher were included. The child's HRQL was rated by parent and child using the Standard Gamble (SG), Visual Analogue Scale (VAS), Time Trade-Off (TTO), and Health Utilities Index Mark 2/3 (HUI2 and HUI3).
22 families were included. The mean parent SG was 0.92 +/- 0.09, which was similar to the mean SG elicited from their children of 0.92 +/- 0.10. The parent and child SG were moderately concordant (ICC=0.64, 95% CI=0.30, 0.83; P=.0005). In contrast, TTO scores were not concordant (ICC=0.14, 95% CI=-0.29, 0.53; P=.3), with parents (mean TTO=0.77 +/- 0.31) rating HRQL worse than children (mean TTO=0.92 +/- 0.11; P=.04). Similarly, the mean parent HUI2 of 0.82 +/- 0.22 was lower than the child HUI2 of 0.95 +/- 0.07; P=.02 and HUI2 were not concordant (ICC=0.11, 95% CI=-0.35, 0.53; P=.3) between parents and children.
Parents and children rate HRQL similarly according to SG, but parents rate HRQL significantly worse using TTO and HUI2.