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

这个项目的目的是验证一种新的方法来衡量病人从医学治疗中获益。该方法名为“日常体验抽样问卷”（DESQ），评估患者在日常生活中随机选择的主观幸福感。目前，治疗效果通常由患者回顾性评估其因疾病造成的损害来确定，例如通过参考上周的情况（健康相关生活质量的概念）。这种回顾性测量可能会有偏差，因为患者对一周前感觉的回忆往往是不可靠的，而且还会被对健康状况的心理关注所扭曲。预期经济政策咨询委员会将消除这种偏见的很大一部分。DESQ结合了现有的两种主观幸福感测量方法的特点，即“体验抽样”和“一天重建法”。与这些方法相比，执行DESQ所需的时间更少，因此使用起来更具成本效益。DESQ已经在牛皮癣患者和健康人群中进行了试点测试。在这个项目中，120名牛皮癣患者和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，各组还将被要求采用经验抽样（目前衡量主观幸福感的黄金标准）的方法来评估他们的幸福感。与健康有关的生活质量（这是目前衡量治疗效果的标准指标）也将进行评估。将每周(a) DESQ和(b)经验抽样法的数据转换为主观幸福感的比例指数值。DESQ将通过分析其与经验抽样方法的一致性来检验标准效度。此外，还将确定其与健康相关的生活质量的关系。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（即测量本身导致偏差值的影响）。如果DESQ被证明是有效和可行的，未来的临床和卫生经济学研究可能会使用它来确定患者从医学治疗中获益。

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.