Subjective Well-being as an Indicator of Patient-relevant Treatment Benefit: Validation of a Simplified 'Day Reconstruction Method' Using the Example of Psoriasis

该项目的目的是验证一种衡量患者从医疗治疗中获益的新方法。这种名为“每日体验抽样问卷”（DESQ）的方法评估患者在日常生活中随机选择的时刻的主观幸福感。目前，治疗益处通常由患者回顾性评估其因疾病造成的损伤来确定，例如参考上周（与健康相关的生活质量的概念）。这种回顾性测量可能会有偏差，因为患者对一周前感受的回忆往往不可靠，而且还会因心理上对健康状况的关注而被扭曲。预计 DESQ 将消除大部分这种偏见。 DESQ 结合了两种现有的主观幸福感测量方法的特点，即“经验抽样”和“日重建法”。与这些方法相比，DESQ 执行起来耗时更少，因此使用起来更具成本效益。 DESQ 已在银屑病患者和健康人中进行了试点测试。在该项目中，120 名银屑病患者和 120 名健康人将通过连续三周填写 DESQ 来评估他们的健康状况。在此期间，各小组还将被要求通过应用经验抽样的方法（当前衡量主观幸福感的黄金标准）来评估他们的幸福感。还将评估与健康相关的生活质量（这是当前治疗效果的标准指标）。每周的（a）DESQ和（b）经验抽样法的数据将转化为主观幸福感的比率尺度指数值。将通过分析 DESQ 与经验抽样方法的一致性来测试其标准有效性。此外，还将确定其与健康相关生活质量的关联。进一步的研究问题包括仪器对变化的敏感性和可能的​​反应性影响（即测量本身的影响导致偏差值）。如果 DESQ 被证明有效且可行，未来的临床和健康经济学研究可能会用它来确定患者从医疗治疗中受益。

The aim of this project is to validate a new method for measuring patient benefit from medical treatments. The method named "Daily Experience Sampling Questionnaire" (DESQ) assesses the patients' subjective well-being at randomly selected moments in everyday life. Currently treatment benefit is usually determined by patients retrospectively rating their impairments due to the disease, for example by referring to the last week (concept of health-related quality of life). This retrospective measurement can be biased since the patients' recall of how they felt a week ago often turns out to be unreliable and also distorted by the mental focus on their health situation. It is expected that the DESQ will eliminate a great part of this bias. The DESQ combines features of 2 existing methods for measuring subjective well-being called "experience sampling" and "day reconstruction method". Compared to these methods, the DESQ will be less time-consuming to conduct and therefore more cost-effective to use. The DESQ has already been pilot tested in patients with psoriasis and in healthy persons. In this project, 120 patients with psoriasis and 120 healthy persons will evaluate their well-being by filling out the DESQ for three consecutive weeks. During this period, the groups will also be asked to evaluate their well-being by applying the method of experience sampling (the current gold standard of measuring subjective well-being). Health-related quality of life (which is the current standard indicator of treatment benefit) will also be assessed. The data of (a) the DESQ and (b) the experience sampling method for each week will be transformed into ratio-scaled index values on subjective well-being. The DESQ will be tested for criterion validity by analysing its concordance with the experience sampling method. In addition, its association to health-related quality of life will be determined. Further research questions include the instrument's sensitivity to change and possible reactivity effects (i.e., an effect of the measurement itself resulting in biased values). If the DESQ proves to be valid and feasible, future clinical and health economic studies may use it to determine patient benefit from medical treatments.