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

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Abstract

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 (HUI2 and HUI3).

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 ± 0.31) 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.

Conclusion

Parents and children rate HRQL similarly according to SG, but parents rate HRQL significantly worse using TTO and HUI2.

Section snippets

Background

Parents are frequently asked to act as a proxy in the elicitation of health-related quality of life (HRQL) for children who are too young or too ill to provide a meaningful response. Eiser and Morse [1] recently reviewed 14 studies in which parent and child assessments of HRQL were compared. In general, they found that parents and children agreed upon more observable phenomenon such as level of physical activity, functioning and symptoms; conversely, poor agreement was seen in more subjective

Study population

We interviewed families of children admitted to the oncology ward for chemotherapy and families of children from the outpatient rheumatology, hemophilia, or bone marrow transplantation (BMT) clinics.

We included families in which the child was in grade 6 or above (∼12 years of age) and less than 18 years of age who were accompanied by at least one English-speaking parent. Cancer patients receiving their first course of chemotherapy, those receiving palliative chemotherapy, and those less than 2

Demographics

In the study time frame, 27 families were invited to participate and 5 refused; thus, 22 families consented to participate. Of the five families who refused, four parents refused and one child refused. One was from the oncology inpatient ward and four were from the outpatient clinic (two rheumatology; two BMT). The mean parental age was 43.3 ± 4.7 years; 18 (82%) of the parents were mothers. The mean age of their children was 13.7 ± 1.7 years; 10 (45%) children were female. These patients were

Discussion

We have shown that parent and child utilities may differ from each other depending on the instrument used. Specifically, parent proxy utilities were significantly lower than child self-report utilities using the TTO and HUI2. Conversely, the parent and child SG were similar and moderate concordance was seen.

Our finding that parent proxy ratings can be lower than child self-report ratings is consistent with other studies that have examined non-utility-based measures [13], [14]. For example, Levi

Acknowledgments

The project was supported by the Pediatric Consultants Grant from the Hospital for Sick Children, an Education Grant from Health Utilities, Inc., for use of the HUI® instrumentation and a summer studentship from the Canadian Hemophilia Society. LS is supported by a Canadian Institutes of Health Research Post-doctoral Fellowship and a Hospital for Sick Children Clinician Scientist Fellowship; MG holds the POGO Chair in Childhood Cancer Control; and BMF is supported by a Canada Research Chair.

We

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