Department of Rheumatology, Erasmus MC, Rotterdam, Zuid-Holland, The Netherlands
Tranzo, Tilburg University, Tilburg, Noord-Brabant, The Netherlands.
RMD Open. 2024 Oct 22;10(4):e004699. doi: 10.1136/rmdopen-2024-004699.
The widespread adoption of wearables, for example, smartphones and smartwatches in the daily lives of the general population, allows passive monitoring of physiological and behavioural data in the real world. This qualitative study explores the perspective of psoriatic arthritis (PsA) patients towards these so-called digital biomarkers (dBMs).
As part of a Design Thinking approach, six focus groups were conducted involving 27 PsA patients. The semistructured topic guide included disease activity, coping strategies, care needs, and potential advantages and disadvantages of dBMs. Thematic analysis followed an abductive coding method.
PsA daily permeates patients' lives, both physically and mentally. Participants discussed how their lives are focused on minimising the impact of the disease on their daily routines. Their attempts to gain control over their disease highly depend on trial and error. Flare-ups are related to physiological as well as behavioural micro and macro changes. Understanding these changes could enable the detection of (early) flare. Participants elicited pros and cons of the use of dBMs, discussed their intended use and made practical remarks. This led to three main themes: 'Perceived dBM opportunities', 'Mapping Disease activity' and 'Perceived dBM barriers and pitfalls'.
PsA patients are receptive to dBMs for tracking the disease symptoms. Disease activity is regarded multifaceted and thus, dBMs should include a broad range of features to truly reflect the disease activity status. Reducing the time of trial and error in learning to manage the disease is regarded beneficial. Establishing and maintaining the relationship with their attending physicians is a prerequisite, even if remote patient monitoring becomes an alternative for some physical hospital visits.
可穿戴设备(例如智能手机和智能手表)在普通人群日常生活中的广泛应用,使得可以在真实世界中被动监测生理和行为数据。本定性研究探讨了银屑病关节炎(PsA)患者对这些所谓的数字生物标志物(dBM)的看法。
作为设计思维方法的一部分,进行了六次焦点小组讨论,涉及 27 名 PsA 患者。半结构化主题指南包括疾病活动度、应对策略、护理需求以及 dBM 的潜在优缺点。主题分析采用归纳编码方法。
PsA 每天都渗透到患者的生活中,无论是身体上还是精神上。参与者讨论了他们的生活如何集中在最大限度地减少疾病对日常生活的影响。他们试图控制疾病的努力高度依赖于反复试验。发作与生理和行为微观和宏观变化有关。了解这些变化可以实现(早期)发作的检测。参与者引出了使用 dBM 的利弊,讨论了它们的预期用途并提出了实际的看法。这导致了三个主要主题:“感知的 dBM 机会”、“映射疾病活动”和“感知的 dBM 障碍和陷阱”。
PsA 患者愿意使用 dBM 来跟踪疾病症状。疾病活动度被认为是多方面的,因此,dBM 应包括广泛的特征,以真实反映疾病活动状态。减少学习管理疾病的反复试验时间被认为是有益的。与主治医生建立和维持关系是前提,即使远程患者监测成为某些物理医院就诊的替代方案。