Assessment of health‐related quality of life in children with cancer

BACKGROUND: In pediatric settings, measures of health-related quality of life (HRQL) are often obtained by proxy, especially from parents, but the correlation between parental report and patient report has not been clearly established. In the current study, the authors examined the agreement between child and parent reports of HRQL in children with cancer (both those receiving treatment and those off treatment) and healthy controls. METHODS: Two groups of children with cancer who differed with regard to treatment status (n = 199) and a group of healthy control children (n = 108) were assessed using a standardized measure of HRQL. Both children and parents reported on the child's HRQL using parallel forms of the Children's Health Questionnaire. RESULTS: Significant parent-child correlations were found for all 10 HRQL scales, and these correlations were higher in the cancer groups compared with controls. Parents in the cancer groups tended to underestimate the HRQL of their children compared with the child report, although there were no significant parent-child mean differences in the group of patients who were off treatment and only 2 significant differences in the group of children receiving treatment. In contrast, parents in the control group tended to overestimate the HRQL of their children, and the parent-child differences were found to be larger, achieving statistical significance on 8 of 10 scales. CONCLUSIONS: Parents and children tend to report comparable child HRQL outcomes, and this is particularly true in oncology populations. In cases in which the child is either too young or too ill to provide a self-report, parent-reported HRQL can be viewed as a reliable substitute.