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中受益的新方法。该方法名为“日常体验抽样调查问卷”(DESQ)，评估患者在日常生活中随机选择的时刻的主观幸福感。目前的治疗福利通常是由患者对其因疾病造成的损害进行回顾评估来确定的，例如通过参考最近一周(与健康相关的生活质量概念)。这种回溯性测量可能是有偏见的，因为患者对一周前感受的回忆往往被证明是不可靠的，而且还被对自己健康状况的心理关注所扭曲。预计DESQ将在很大程度上消除这种偏见。DESQ结合了现有的两种测量主观幸福感的方法--“体验抽样法”和“一天重建法”。与这些方法相比，DESQ进行起来花费的时间更少，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中进行了试点测试。在这个项目中，120名银屑病患者和120名健康人将通过连续三周填写DESQ来评估他们的幸福感。在此期间，这些小组还将被要求通过应用经验抽样的方法(目前衡量主观幸福感的黄金标准)来评估他们的幸福感。还将评估与健康有关的生活质量(这是目前衡量治疗效益的标准指标)。每周的(A)DESQ和(B)经验抽样方法的数据将被转换为主观幸福感的比率标度指标值。将通过分析DESQ与经验抽样方法的一致性来测试标准的有效性。此外，还将确定它与与健康相关的生活质量的关联。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.