As a practitioner dedicated to improving outcomes for children, it's crucial to stay informed about the latest research in pediatric health-related quality of life (HRQoL). A recent systematic review and meta-analysis titled "Are We Agreed? Self- Versus Proxy-Reporting of Paediatric Health-Related Quality of Life (HRQoL) Using Generic Preference-Based Measures: A Systematic Review and Meta-Analysis" offers valuable insights into the discrepancies between self- and proxy-reporting of HRQoL in children. Understanding these differences can significantly impact your approach to therapy and assessments.
Key Findings from the Study
The study analyzed 30 primary studies involving 3084 children and 3300 proxies, revealing that there is generally poor inter-rater agreement between child self-reports and proxy reports (e.g., parents or health professionals) of overall HRQoL. The overall intraclass correlation coefficient (ICC) from the meta-analysis was estimated to be 0.49, indicating poor agreement.
Key takeaways include:
- Higher agreement was observed in physical health domains compared to psychosocial domains.
- Parents generally demonstrated higher agreement with children compared to health professionals.
- Agreement was lower in cancer-related studies compared to non-cancer-related studies.
Implications for Practitioners
These findings highlight the importance of incorporating self-reports from children wherever feasible. While proxy reports are necessary in certain situations, especially with younger children or those with cognitive impairments, they should not be the sole source of information for HRQoL assessments. Here are some actionable steps to consider:
Encourage Self-Reporting
Whenever possible, encourage children to self-report their HRQoL. This can be facilitated through age-appropriate and easy-to-understand questionnaires. Training children on how to accurately complete these assessments can also improve the reliability of their responses.
Use Multiple Sources of Information
Combine self-reports with proxy reports to get a more comprehensive view of the child's HRQoL. This approach can help identify discrepancies and provide a more balanced understanding of the child's health status.
Focus on Observable Domains
Given the higher agreement in physical health domains, place additional emphasis on these areas during assessments. However, do not neglect psychosocial domains; instead, use targeted questions and observational methods to gather more accurate information.
Educate and Train Proxies
Provide training to parents and health professionals on how to accurately assess and report a child's HRQoL. This can help reduce biases and improve the reliability of proxy reports.
Further Research and Continuous Learning
The study underscores the need for further research to better understand the factors influencing the discrepancies between self- and proxy-reports. As a practitioner, staying updated with the latest research and continuously refining your assessment methods is crucial for improving outcomes for children.
To read the original research paper, please follow this link: Are We Agreed? Self- Versus Proxy-Reporting of Paediatric Health-Related Quality of Life (HRQoL) Using Generic Preference-Based Measures: A Systematic Review and Meta-Analysis.
