Concordance between Patient-Proxy reporting of Quality of Life in Pediatric Cancer Care

Abstract

Background: Over the past three decades, health-related quality of life (HRQoL) assessment has emerged as a critical component in the clinical care of patients. Parent proxies are a crucial aspect of HRQoL assessment in pediatric patients with cancer, with many authors reporting discrepancies in patients’ and parents’ scores of HRQoL. Understanding the agreement between patient and parent proxy reports of HRQoL is crucial to ensure that appropriate care is provided to the child. This scoping review examines the current literature on the agreement between patients’ and parents’ proxy reports of HRQoL in children with cancer. Methods: A comprehensive search was conducted of electronic bibliographic databases, including PubMed, CINAHL, Embase, and PsycINFO, for articles published regardless of the year of publication. The inclusion criteria involved studies that evaluated the agreement between child self-report and parent-proxies report of HRQoL of children with cancer. The articles were retrieved using a three-stage screening process: title and abstract screening, full-text screening, and data extraction. A meta-analysis of pooled mean differences of child-parent scores using a random-effect model was done. Results: The search yielded 8821 articles, but only twenty studies met the inclusion criteria and were included in the final analysis. Most studies reported poor to moderate agreement between child and parent’s scores of HRQoL. Factors associated with the agreement were underexplored in the included studies, but the few that reported on the factors outlined the child’s age, type of cancer, place of HRQoL assessment, the family attendance ratio, and the domain measured. Most studies attributed discordance in child-proxy reports of HRQoL varying perspectives or complementary views of child and parents about the patient’s HRQoL. Conclusion: Overall, this scoping review highlights the crucial subject of the differences in observer reports of HRQoL and the need for clinicians and researchers to consider these differences when interpreting HRQoL reports in clinical care settings. As such, discordance should be seen as a trigger to a more meaningful discussion about the measurement of HRQoL of children with cancer. More research is needed to understand the factors influencing agreement or disagreement between reports since this information can help clinicians provide more personalized care that addresses the unique needs of each child.