Health-related quality of life (HRQL) scores reported from parents and their children with chronic illness differed depending on utility elicitation method

Objective: 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. Study Design and Setting: 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 (HU12 and HU13). Results: 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 +/- 0.3 1) rating HRQL worse than children (mean TTO = 0.92 +/- 0.11; P =.04). Similarly, the mean parent HU12 of 0.82 +/- 0.22 was lower than the child HU12 of 0.95 +/- 0.07; P =.02 and HU12 were not concordant (ICC = 0.11, 95% CI = -0.35, 0.53; P =.3) between parents and children. Conclusion: Parents and children rate HRQL similarly according to SG, but parents rate HRQL significantly worse using TTO and HU12. (C) 2004 Elsevier Inc. All rights reserved.