Department of Pediatrics, Western University, London, Ontario, Canada.
Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.
Value Health. 2021 Apr;24(4):556-567. doi: 10.1016/j.jval.2020.11.007. Epub 2020 Dec 29.
Patient-reported outcomes are increasingly recommended to guide patient care, develop and evaluate interventions, and modify health systems. However, not enough is known about whether and how children and adolescents, as "experts" in their own health and quality of life (QoL), are being engaged in the development of instruments. Our goals in this review were (1) to identify all QoL-related instruments that have included children and/or adolescents in the development of questionnaire content, including identification of themes and items; and (2) to report how this was done; and (3) to highlight those that used qualitative methods.
MEDLINE and Embase were searched for child- or adolescent-completed QoL-related instruments, supplemented by hand-searching of relevant reviews until 2020. Original development papers were identified and retrieved when possible, from which instrument characteristics and details of qualitative development methods were extracted.
We identified 445 instruments, of which 88 used qualitative methods for content development. Interviews and focus groups were the most common methods. A variety of play techniques were used to engage the child and adolescent participants. The specific criteria for the inclusion of children and adolescents (age, developmental stage, duration, and nonclinical location) varied considerably.
Researchers frequently involve children and adolescents in qualitative methods when developing QoL-related measures; however, there is little information about the methods used. Better reporting of methodology, improved dissemination of methods guidelines, and research into optimal ways of including children and adolescents in the process of instrument development would be useful.
患者报告的结局越来越多地被推荐用于指导患者护理、开发和评估干预措施以及改进卫生系统。然而，人们对于儿童和青少年作为自身健康和生活质量（QoL）的“专家”，他们是否以及如何参与工具的开发，了解得还不够充分。我们在本次综述中的目标是：（1）确定所有包含儿童和/或青少年参与问卷内容开发的与 QoL 相关的工具，包括识别主题和项目；（2）报告其具体的开发方式；（3）突出那些使用定性方法的工具。
在 MEDLINE 和 Embase 中搜索儿童或青少年完成的与 QoL 相关的工具，并辅以 2020 年之前对相关综述的手工搜索。当可能时，我们确定了原始开发论文并检索了这些论文，从中提取了工具特征和定性开发方法的详细信息。
我们共确定了 445 种工具，其中 88 种工具使用定性方法进行内容开发。访谈和焦点小组是最常用的方法。采用了各种游戏技术来吸引儿童和青少年参与者。纳入儿童和青少年的具体标准（年龄、发育阶段、持续时间和非临床地点）差异很大。
研究人员在开发与 QoL 相关的测量工具时经常使用儿童和青少年的定性方法；然而，关于所使用的方法的信息却很少。更好地报告方法学、改进方法指南的传播以及研究最佳的方式来让儿童和青少年参与工具开发的过程将是有益的。
