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患者对移动医疗技术远程测量和管理癫痫的可接受性的看法:定性分析。

Patient perspectives on the acceptability of mHealth technology for remote measurement and management of epilepsy: A qualitative analysis.

机构信息

Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK.

Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK.

出版信息

Epilepsy Behav. 2019 Aug;97:123-129. doi: 10.1016/j.yebeh.2019.05.035. Epub 2019 Jun 24.

Abstract

BACKGROUND

Innovative uses of mobile health (mHealth) technology for real-time measurement and management of epilepsy may improve the care provided to patients. For instance, seizure detection and quantifying related problems will have an impact on quality of life and improve clinical management for people experiencing frequent and uncontrolled seizures. Engaging patients with mHealth technology is essential, but little is known about patient perspectives on their acceptability. The aim of this study was to conduct an in-depth qualitative analysis of what people with uncontrolled epilepsy think could be the potential uses of mHealth technology and to identify early potential barriers and facilitators to engagement in three European countries.

METHOD

Twenty people currently experiencing epileptic seizures took part in five focus groups held across the UK, Italy, and Spain. Participants all completed written consent and a demographic questionnaire prior to the focus group commencing, and each group discussion lasted 60-120 min. A coding frame, developed from a systematic review of the previous literature, was used to structure a thematic analysis. We extracted themes and subthemes from the discussions, focusing first on possible uses of mHealth and then the barriers and facilitators to engagement.

RESULTS

Participants were interested in mHealth technology as a clinical detection tool, e.g., to aid communication about seizure occurrence with their doctors. Other suggested uses included being able to predict or prevent seizures, and to improve self-management. Key facilitators to engagement were the ability to raise awareness, plan activities better, and improve safety. Key barriers were the potential for increased stigma and anxiety. Using familiar and customizable products could be important moderators of engagement.

CONCLUSION

People with uncontrolled epilepsy think that there is a scope for mHealth technology to be useful in healthcare as a detection or prediction tool. The costs will be compared with the benefits when it comes to engagement, and ongoing work with patients and other stakeholders is needed to design practical resources.

摘要

背景

创新使用移动医疗(mHealth)技术实时测量和管理癫痫,可能改善为患者提供的护理。例如,检测癫痫发作并量化相关问题将对生活质量产生影响,并改善经常发作且不受控制的患者的临床管理。使用 mHealth 技术与患者互动至关重要,但人们对患者对其可接受性的看法知之甚少。本研究旨在对无法控制癫痫发作的人对 mHealth 技术的潜在用途进行深入的定性分析,并在三个欧洲国家确定早期参与的潜在障碍和促进因素。

方法

20 名目前正在经历癫痫发作的人参加了在英国、意大利和西班牙举行的五次焦点小组。参与者在参加焦点小组之前都完成了书面同意书和人口统计问卷,每次小组讨论持续 60-120 分钟。使用从之前文献的系统评价中开发的编码框架来构建主题分析。我们从讨论中提取主题和子主题,首先关注 mHealth 的可能用途,然后关注参与的障碍和促进因素。

结果

参与者对 mHealth 技术作为临床检测工具很感兴趣,例如,帮助与医生沟通癫痫发作情况。其他建议的用途包括能够预测或预防癫痫发作,并改善自我管理。参与的主要促进因素是提高意识、更好地计划活动和提高安全性。主要障碍是潜在的耻辱感和焦虑感增加。使用熟悉和可定制的产品可能是参与的重要调节因素。

结论

无法控制癫痫发作的人认为 mHealth 技术在医疗保健领域作为检测或预测工具具有一定的应用潜力。在涉及参与时,将对成本和收益进行比较,需要与患者和其他利益相关者进行持续合作,以设计实用的资源。

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