Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Martinistraße 52, 20246, Hamburg, Germany.
School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK.
Qual Life Res. 2021 Jul;30(7):2081-2096. doi: 10.1007/s11136-021-02802-8. Epub 2021 Mar 12.
Health fluctuations even within a single day are typical in multiple sclerosis (MS), but are not captured by widely used questionnaires like the EQ-5D-5L. This exploratory study aimed to develop an ambulatory assessment (AA) version of the EQ-5D-5L (EQ-5D-AA) where patients rate their health on mobile phones multiple times per day over several days, and to assess its feasibility and face validity.
An initial EQ-5D-AA version was based on two patient focus groups. It was then tested and continuously developed in an iterative process: patients completed it over several days, followed by debriefing interviews. Findings were used to refine the EQ-5D-AA, with the resulting version being tested by the subsequent wave of patients until participants declared no need for changes anymore. Before and after the AA period, participants completed the standard paper-based EQ-5D-5L asking about 'today'.
Focus group participants reported that their impairments often fluctuated between and within days. They regarded an AA with three assessments per day over seven days most appropriate; assessment should be retrospective to the previous assessment, but not all items should be assessed at each time point. Four waves of AA testing were conducted. Thirteen out of the 17 participants preferred the AA over standard assessment as they regarded it more informative, but not too burdensome.
The newly developed one-week AA of the EQ-5D-5L captures within-day and day-to-day health fluctuations in people with MS. From the patients' perspective, it is a feasible and face valid way to provide important information beyond what is captured by the standard EQ-5D-5L.
多发性硬化症（MS）患者的健康状况甚至在一天内都会发生波动，但这在像 EQ-5D-5L 这样广泛使用的问卷中却无法体现。本探索性研究旨在开发一种 EQ-5D-5L 的移动评估（AA）版本（EQ-5D-AA），患者可以在几天内通过手机多次对自身健康状况进行评分，并评估其可行性和表面有效性。
最初的 EQ-5D-AA 版本基于两个患者焦点小组。然后，它在一个迭代过程中进行了测试和不断开发：患者在几天内完成它，然后进行汇报访谈。发现结果用于完善 EQ-5D-AA，后续患者使用的版本进行测试，直到参与者宣布不再需要更改。在 AA 期前后，参与者完成了基于纸质的标准 EQ-5D-5L，询问“今天”的情况。
焦点小组参与者报告称，他们的障碍经常在天内和天之间波动。他们认为每天评估三次，持续七天的 AA 最合适；评估应该是对前一次评估的回顾，但不是每次都要评估所有项目。进行了四轮 AA 测试。17 名参与者中有 13 名更喜欢 AA 而不是标准评估，因为他们认为 AA 更具信息量，但也不会过于繁琐。
新开发的 EQ-5D-5L 一周 AA 可以捕捉到 MS 患者的日内和日常健康波动。从患者的角度来看，这是一种可行且有效的方法，可以提供标准 EQ-5D-5L 无法捕捉到的重要信息。
