Ferreira João, França Miguel, Rei Mariana, Peixoto Ricardo, Armand Larsen Sidsel, Bernini Adriano, Lopes Lígia, Conde Carlos, Claro João
Faculty of Engineering, University of Porto, Porto, Portugal; Biostrike Unipessoal Lda, Porto, Portugal.
i3S - Instituto de Investigação e Inovação em Saúde, University of Porto, Porto, Portugal.
Epilepsy Behav. 2024 Dec;161:110034. doi: 10.1016/j.yebeh.2024.110034. Epub 2024 Sep 21.
As epilepsy management medical devices emerge as potential technological solutions for prediction and prevention of sudden death in epilepsy (SUDEP), there is a gap in understanding the features and priorities that should be included in the design of these devices. This study aims to bridge the gap between current technology and emerging needs by leveraging insights from persons with epilepsy (PWE) and caregivers (CG) on current epilepsy management devices and understanding how SUDEP awareness influences preferences and design considerations for potential future solutions.
Two cross-sectional surveys were designed to survey PWE and CG on medical device design features, SUDEP awareness, and participation in medical device research. Data analysis included both qualitative thematic analysis and quantitative statistical analysis.
The survey revealed that among 284 responses, CG were more aware of SUDEP than PWE. Comfort was identified as the primary concern regarding wearable medical devices for epilepsy management with significant differences between PWE and CG regarding acceptance and continuous use preferences. The thematic analysis identified integration with daily life, aesthetic and emotional resonance, adaptability to seizure characteristics, and user-centric design specifications as crucial factors to be considered for enhanced medical device adoption. The integration of a companion app is seen as an important tool to enhance communication and data sharing.
This study reveals that while SUDEP awareness can promote the development of future SUDEP predictive and preventive medical devices, these should be designed to mitigate its impact on daily life and anxiety of both PWE and CG. Comfort and acceptance are seen as key priorities to support continuous use and are seen as a technical requirement of future medical devices for SUDEP prediction and prevention. Widespread adoption requires these technologies to be customizable to adapt to different lifestyles and social situations. A holistic approach should be used in the design of future medical devices to capture several dimensions of PWE and CG epilepsy management journey and uphold communication between healthcare professionals, PWE and CG.
Data from this study highlight the importance of considering user preferences and experiences in the design of epilepsy management medical devices with potential applicability for SUDEP prediction and prevention. By employing user-centered design methods this research provides valuable insights to inform the development of future SUDEP prediction and prevention devices.
随着癫痫管理医疗设备成为预测和预防癫痫猝死（SUDEP）的潜在技术解决方案，在理解这些设备设计应包含的特征和优先事项方面存在差距。本研究旨在通过利用癫痫患者（PWE）和护理人员（CG）对当前癫痫管理设备的见解，弥合当前技术与新出现需求之间的差距，并了解SUDEP意识如何影响对潜在未来解决方案的偏好和设计考量。
设计了两项横断面调查，以调查PWE和CG对医疗设备设计特征、SUDEP意识以及参与医疗设备研究的情况。数据分析包括定性主题分析和定量统计分析。
调查显示，在284份回复中，CG比PWE更了解SUDEP。舒适性被确定为癫痫管理可穿戴医疗设备的主要关注点，PWE和CG在接受度和持续使用偏好方面存在显著差异。主题分析确定，与日常生活的整合、美学和情感共鸣、对癫痫发作特征的适应性以及以用户为中心的设计规范是提高医疗设备采用率需考虑的关键因素。配套应用程序的整合被视为加强沟通和数据共享的重要工具。
本研究表明，虽然SUDEP意识可以促进未来SUDEP预测和预防医疗设备的开发，但这些设备的设计应减轻其对PWE和CG日常生活及焦虑的影响。舒适性和接受度被视为支持持续使用的关键优先事项，并且被视为未来SUDEP预测和预防医疗设备的一项技术要求。广泛采用要求这些技术能够定制，以适应不同的生活方式和社会情况。在未来医疗设备的设计中应采用整体方法，以涵盖PWE和CG癫痫管理过程的多个方面，并保持医疗保健专业人员、PWE和CG之间的沟通。
本研究数据凸显了在癫痫管理医疗设备设计中考虑用户偏好和体验的重要性，这些设备对SUDEP预测和预防具有潜在适用性。通过采用以用户为中心的设计方法，本研究提供了宝贵的见解，为未来SUDEP预测和预防设备的开发提供参考。
