Abstract
PurposeProxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers’ reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress).MethodsBoth parents completed the PedsQL generic (child’s HRQoL), Short Form-12 (own QoL) and Distress Thermometer for Parents. To assess agreement in child HRQoL, intra-class correlation coefficients (ICCs) were calculated. Differences between fathers/mothers were assessed with paired t tests. Systematic disagreement patterns were visualized with Bland–Altman plots. Characteristics of parental couples with a mean proxy difference in the highest quartile (highest proxy score minus lowest proxy score) were explored with multiple logistic regression analysis.ResultsParents of 120 children with cancer (87% post-treatment, mean age 11.0 ± 5.7 years) participated. No significant differences were found between paternal and maternal proxy scores, and agreement was good on all scales (ICCs 0.65–0.83). Bland–Altman plots revealed no systematic disagreement patterns, but there was a wide range in magnitude of the differences, and differences went in both directions. Couples with a mean proxy difference (irrespective of which direction) in the highest quartile (± 20 points) were more likely to have a child in active treatment, with retinoblastoma or relapsed disease, and to diverge in their own QoL.ConclusionsIf proxy reports of only one parent are available, clinicians may reasonably assume that paternal and maternal reports are interchangeable. However, if in doubt, respondent’s sex is not of major importance, but clinicians should be aware of patient’s and family’s characteristics.
Highlights
Parent proxy reports are commonly used in pediatric care and research [1]
No significant differences were found in child characteristics between participants of the study and other children of the Amsterdam Parent Project plus non-responders, except for the percentage of children in active treatment (13% in participants vs 7%, p = 0.04; data not shown)
We found that parents were more likely to differ in their proxy-rated total healthrelated quality of life (HRQoL) and psychosocial score (PSHS) scores if their child was still in active treatment
Summary
Parent proxy reports are commonly used in pediatric care and research [1]. Proxy reports are indispensable when children are neurocognitively impaired, too young, or too ill to respond for themselves [6, 7]. This is often true in childhood cancer. Extensive research has shown that children are at risk for HRQoL impairment, both during and after treatment. This is reported by children as well as their
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