A Systematic Review of International Guidance for Self-Report and Proxy Completion of Child-Specific Utility Instruments

Objectives: This study aimed to identify and summarize published guidance and recommendations for child self-and proxy assessment of existing child-specific instruments of health-related quality of life (HRQoL) that are accompanied by utilities.Methods: A total of 9 databases plus websites of (1) health technology assessment and health economics outcomes research organizations and (2) instrument developers were systematically searched. Studies were included if they reported guidance for child self-and proxy assessment for child populations (0-18 years old). Three reviewers independently screened titles, abstracts, and full-text reviews against the inclusion criteria. Key features of the guidance identified were summarized.Results: A total of 19 studies met the inclusion criteria. In general, journal articles provided little guidance on child self-and proxy assessment, with the majority focused on instrument development and psychometric performance more broadly. Instrument developers' websites provided more guidance for child self-and proxy reports with specific guidance found for the EQ-5D-Y and the Pediatric Quality of Life Inventory. This guidance included the minimum age for self-report and mode of administration; recommended proxy types, age range of child for whom proxy report can be completed, and target population; and recall period. Websites of leading organizations provided general guidance on HRQoL evaluation in children but lacked specific guidance about self-and proxy completion.Conclusions: EQ-5D-Y and Pediatric Quality of Life Inventory developers' websites provided the most comprehensive guidance for self-report and proxy report of their respective instruments. More evidence is required for developing best practice guidance on why, when, and how to use self-and proxy reports in assessing HRQoL in child populations.

Automated summary

This study aimed to identify and summarize published guidance and recommendations for child self-and proxy assessment of existing child-specific instruments of health-related quality of life. Overall, journal articles provided little guidance on child self-and proxy assessment, while instrument developers' websites provided more comprehensive guidance for specific instruments.