Health Economics and Health Care Management, School of Public Health, Bielefeld University, Universitätsstraße 25, 33615, Bielefeld, Germany.
Qual Life Res. 2022 Jan;31(1):215-229. doi: 10.1007/s11136-021-02899-x. Epub 2021 Jun 10.
PURPOSE: The aim of this study was to develop and test a cognitive dimension as a bolt-on for the German version of the EQ-5D-Y (Youth). METHODS: A literature review and six focus groups with children and adolescents were used to develop the cognitive dimension for the EQ-5D-Y. In a two-phase pretest, the acceptability, feasibility and performance of this dimension were assessed (phase 1: qualitative face-to-face interviews, phase 2: standard pretest in a clinical setting). In total, 280 children and adolescents participated in this study. RESULTS: School performance, concentration, memory and learning ability represent the most important components of cognitive functioning in children and adolescents. Hence, those components were incorporated into the cognitive dimension of the EQ-5D-Y by adding four items. For children and adolescents living with a rheumatic disorder or type 1 diabetes mellitus, the EQ-5D-Y plus a cognitive bolt-on demonstrated good acceptability, feasibility and performance. The cognitive items improved the explanatory power for the EQ visual analogue scale (EQ-VAS). Factor analysis has shown that a reduction of the cognitive bolt-on into one or two item(s) is justifiable. CONCLUSION: By enhancing the EQ-5D-Y with a cognitive bolt-on, we developed an instrument that incorporates current findings on Health-Related Quality of Life (HRQoL) and is suitable for the target population. Empirical results of this study show that cognitive functioning is an important part of HRQoL assessment in children and adolescents. The inclusion of a cognitive dimension in the EQ-5D-Y improves the HRQoL measurement.
目的:本研究旨在开发和测试一个认知维度,作为 EQ-5D-Y(青年版)德语版的附加内容。
方法:通过文献回顾和 6 组儿童和青少年焦点小组,开发了 EQ-5D-Y 的认知维度。在两项预测试中,评估了该维度的可接受性、可行性和性能(第 1 阶段:定性面对面访谈;第 2 阶段:临床标准预测试)。共有 280 名儿童和青少年参与了这项研究。
结果:学业表现、注意力、记忆力和学习能力是儿童和青少年认知功能的重要组成部分。因此,通过添加四个项目,这些组成部分被纳入 EQ-5D-Y 的认知维度。对于患有风湿性疾病或 1 型糖尿病的儿童和青少年,EQ-5D-Y 加认知附加项表现出良好的可接受性、可行性和性能。认知项目提高了 EQ 视觉模拟量表(EQ-VAS)的解释力。因子分析表明,将认知附加项减少为一个或两个项目是合理的。
结论:通过在 EQ-5D-Y 中增加认知附加项,我们开发了一种工具,该工具结合了健康相关生活质量(HRQoL)的最新发现,适用于目标人群。本研究的实证结果表明,认知功能是儿童和青少年 HRQoL 评估的重要组成部分。在 EQ-5D-Y 中纳入认知维度可以改善 HRQoL 测量。
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