Caring Futures Institute, Flinders University, Adelaide, South Australia, Australia.
Flinders Health and Medical Research Institute, Flinders University, Adelaide, South Australia, Australia.
Value Health. 2022 Oct;25(10):1791-1804. doi: 10.1016/j.jval.2022.04.1723. Epub 2022 Jun 3.
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.
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.
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.
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.
本研究旨在识别和总结已发表的针对具有效用值的现有儿童健康相关生活质量（HRQoL）特定工具的儿童自评和代理评估的指南和建议。
系统搜索了 9 个数据库和（1）卫生技术评估和健康经济学结果研究组织以及（2）工具开发者的网站。如果研究报告了针对儿童人群（0-18 岁）的儿童自评和代理评估指南，则纳入研究。三名审查员独立根据纳入标准筛选标题、摘要和全文。总结了所确定指南的主要特征。
共有 19 项研究符合纳入标准。总体而言，期刊文章对儿童自评和代理评估的指导很少，大多数文章侧重于仪器开发和更广泛的心理测量性能。工具开发者的网站为儿童自评和代理报告提供了更多指导，针对 EQ-5D-Y 和儿科生活质量量表（PedsQL）找到了具体指导。这些指导包括自我报告的最低年龄和管理模式；推荐的代理类型、可完成代理报告的儿童年龄范围和目标人群；以及回忆期。主要组织的网站提供了儿童 HRQoL 评估的一般指导，但缺乏关于自我和代理完成的具体指导。
EQ-5D-Y 和 PedsQL 开发者的网站为其各自工具的自我报告和代理报告提供了最全面的指导。需要更多证据来制定关于在评估儿童人群 HRQoL 时为何、何时以及如何使用自我和代理报告的最佳实践指南。
