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