The proxy problem: child report versus parent report in health-related quality of life research

Abstract

This study evaluates the agreement between child and parent reports on children's health-related quality of life (HRQoL) in a representative sample of 1,105 Dutch children (age 8-11 years old). Both children and their parents completed a 56 item questionnaire (TACQOL). The questionnaire contains seven eight-item scales: physical complaints, motor functioning, autonomy, cognitive functioning, social functioning, positive emotions and negative emotions. The Pearson correlations between the child and parent reports were between 0.44 and 0.61 (p < 0.001). The intraclass correlations were between 0.39 and 0.62. On average, the children reported a significantly lower HRQoL than their parents on the physical complaints, motor functioning, autonomy, cognitive functioning and positive emotions scales (paired t-test: p < 0.05). Agreement on all of the scales was related to the magnitude of the HRQoL scores and to some background variables (gender, age, temporary illness and visiting a physician). According to multitrait-multimethod analyses, both the child and parent reports proved to be valid.

Beneficial Effect of Growth Hormone Treatment on Health-Related Quality of Life in Children with Prader-Willi Syndrome: A Randomized Controlled Trial and Longitudinal Study

“…Parents reported a lower HRQOL in older children with PWS, while this was not reported by the children. Disagreement between parent and child reports on HRQOL was found in other studies in children with other disorders than PWS [12,14]. Parents may score lower because they are negatively influenced by the burden of care-giving, their own well-being, and concerns about their child's future perspectives [32,33], and children might be positively influenced by adaptation to their illness [34].…”

“…However, as parents are generally quite able to determine their child's HRQOL, a combination of child reports and parent reports seems to be most useful [12,13,14]. …”

Applying a developmental approach to quality of life assessment in children and adolescents with psychological disorders: challenges and guidelines

“…This complementary use of self-reports and proxy reports is not a minor issue for the operationalization of a developmental approach to pedopsychiatric QL assessment. Although parents' reports and their children's QL reports are valid, they cannot effectively supplant each other [104]. From this perspective, the complexity and costs related to this methodological option are surpassed by a number of advantages and applications.…”

Health-Related Quality of Life in Short Children Born Small for Gestational Age: Effects of Growth Hormone Treatment and Postponement of Puberty

“…Differences in proxy agreement at the individual child-parent level have been described for the generic TACQOL [32,33]. It has been indicated that children report less consistent and are more influenced by single experiences, while parents give information based on more structured and general observations [18].…”