Bruno Elisa, Simblett Sara, Lang Alexandra, Biondi Andrea, Odoi Clarissa, Schulze-Bonhage Andreas, Wykes Til, Richardson Mark P
Institute of Psychiatry, Psychology & Neuroscience, Division of Neuroscience, King's College London, 5 Cutcombe Road, London SE5 9RX, UK.
Institute of Psychiatry, Psychology and Neuroscience, Department of Psychology, King's College London, De Crespigny Park, London SE5 8AF, UK.
Epilepsy Behav. 2018 Aug;85:141-149. doi: 10.1016/j.yebeh.2018.05.044. Epub 2018 Jun 23.
In recent years, digital technology and wearable devices applied to seizure detection have progressively become available. In this study, we investigated the perspectives of people with epilepsy (PWE), caregivers (CG), and healthcare professionals (HP). We were interested in their current use of digital technology as well as their willingness to use wearables to monitor seizures. We also explored the role of factors influencing engagement with technology, including demographic and clinical characteristics, data confidentiality, need for technical support, and concerns about strain or increased workload.
An online survey drawing on previous data collected via focus groups was constructed and distributed via a web link. Using logistic regression analyses, demographic, clinical, and other factors identified to influence engagement with technology were correlated with reported use and willingness to use digital technology and wearables for seizure tracking.
Eighty-seven surveys were completed, fifty-two (59.7%) by PWE, 13 (14.4%) by CG, and 22 (25.3%) by HP. Responders were familiar with multiple digital technologies, including the Internet, smartphones, and personal computers, and the use of digital services was similar to the UK average. Moreover, age and disease-related factors did not influence access to digital technology. The majority of PWE were willing to use a wearable device for long-term seizure tracking. However, only a limited number of PWE reported current regular use of wearables, and nonusers attributed their choice to uncertainty about the usefulness of this technology in epilepsy care. People with epilepsy envisaged the possibility of understanding their condition better through wearables and considered, with caution, the option to send automatic emergency calls. Despite concerns around accuracy, data confidentiality, and technical support, these factors did not limit PWE's willingness to use digital technology. Caregivers appeared willing to provide support to PWE using wearables and perceived a reduction of their workload and anxiety. Healthcare professionals identified areas of application for digital technologies in their clinical practice, pending an appropriate reorganization of the clinical team to share the burden of data reviewing and handling.
Unlike people who have other chronic health conditions, PWE appeared not to be at risk of digital exclusion. This study highlighted a great interest in the use of wearable technology across epilepsy service users, carers, and healthcare professionals, which was independent of demographic and clinical factors and outpaced data security and technology usability concerns.
近年来,应用于癫痫发作检测的数字技术和可穿戴设备已逐渐普及。在本研究中,我们调查了癫痫患者(PWE)、护理人员(CG)和医疗保健专业人员(HP)的观点。我们关注他们当前对数字技术的使用情况以及使用可穿戴设备监测癫痫发作的意愿。我们还探讨了影响技术参与度的因素的作用,包括人口统计学和临床特征、数据保密性、对技术支持的需求以及对压力或工作量增加的担忧。
基于之前通过焦点小组收集的数据构建了一项在线调查,并通过网络链接进行分发。使用逻辑回归分析,将确定为影响技术参与度的人口统计学、临床和其他因素与报告的使用情况以及使用数字技术和可穿戴设备进行癫痫发作跟踪的意愿相关联。
共完成了87份调查问卷,其中52份(59.7%)由癫痫患者完成,13份(14.4%)由护理人员完成,22份(25.3%)由医疗保健专业人员完成。受访者熟悉多种数字技术,包括互联网、智能手机和个人电脑,数字服务的使用情况与英国平均水平相似。此外,年龄和疾病相关因素不影响对数字技术的使用。大多数癫痫患者愿意使用可穿戴设备进行长期癫痫发作跟踪。然而,只有少数癫痫患者报告目前经常使用可穿戴设备,未使用者将他们的选择归因于该技术在癫痫护理中的有用性存在不确定性。癫痫患者设想通过可穿戴设备更好地了解自己病情的可能性,并谨慎考虑发送自动紧急呼叫的选项。尽管对准确性、数据保密性和技术支持存在担忧,但这些因素并未限制癫痫患者使用数字技术的意愿。护理人员似乎愿意为使用可穿戴设备的癫痫患者提供支持,并认为这减轻了他们的工作量和焦虑。医疗保健专业人员确定了数字技术在其临床实践中的应用领域,但有待对临床团队进行适当重组以分担数据审查和处理的负担。
与患有其他慢性健康状况的人不同,癫痫患者似乎不存在数字排斥的风险。本研究突出了癫痫服务使用者、护理人员和医疗保健专业人员对使用可穿戴技术的浓厚兴趣,这种兴趣独立于人口统计学和临床因素,且超过了对数据安全和技术可用性的担忧。