Seizure detection devices and health-related quality of life: A patient- and caregiver-centered evaluation
Seizure detection devices and health-related quality of life: A patient- and caregiver-centered evaluation
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DOI：
10.1016/j.yebeh.2020.106963
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发表时间：
2020-04-01
影响因子：
2.6
通讯作者：
Rao, Vikram R.
中科院分区：
文献类型：
--
作者：
Chiang, Sharon;Moss, Robert;Rao, Vikram R.
导言：癫痫的不可预测性严重影响癫痫患者的健康相关生活质量(HR-QOL)。癫痫检测设备有可能通过提高癫痫发作的安全性、降低照顾者的过度警觉性和降低癫痫发作焦虑来改善HR-QOL。新出现的数据使人们更好地了解了有助于癫痫患者和照顾者接受检测设备的特征。然而，癫痫检测设备的使用是否与焦虑和HR-QOL的临床意义的改善相关尚不清楚。方法：利用丰富的电子癫痫日记使用者群体，对371名癫痫患者和使用癫痫检测设备和HR-QOL的护理人员收集的一手横断面调查数据进行分析。结果：与非癫痫检测设备使用者相比，癫痫发作检测设备使用者在焦虑、情绪、情绪调节/攻击性、言语/语言、睡眠质量、社交生活、日常生活活动能力、独立性、教育/学术潜力等多个HR-QOL领域受到癫痫影响的可能性显著增加。大多数(80.2%)使用癫痫检测设备的人因使用癫痫检测设备而经历了中等或更大程度的焦虑缓解，而11.1%的人报告说检测设备对焦虑没有任何帮助。尽管有潜在的好处，但在接受调查的癫痫患者中，只有一小部分人(21.8%)使用了癫痫检测设备，而且使用倾向于向年轻患者、高收入和照顾者倾斜。结论：癫痫检测设备在大多数癫痫患者及其照顾者中提供了中等或更大程度的焦虑缓解，但目前对总体HR-QOL的改善的可译性可能有限。负担能力和技术支持是在癫痫患者群体中平等实现利益最大化的潜在障碍。这些考虑因素可能有助于指导未来的设备开发，并为患者-医生关于设备使用和HR-QOL的讨论提供信息。(C)2020 Elsevier Inc.保留所有权利。
Introduction: The unpredictability of epilepsy has a severe impact on health-related quality of life (HR-QOL) for people with epilepsy. Seizure detection devices have the potential to improve HR-QOL by improving seizure safety, reducing caregiver hypervigilance, and reducing seizure anxiety. Emerging data have led to an improved understanding of characteristics that promote acceptability of detection devices for people with epilepsy and caregivers. However, whether usage of seizure detection devices is associated with clinically meaningful improvement in anxiety and HR-QOL remains poorly understood.Methods: We analyzed cross-sectional survey data collected first-hand from 371 people with epilepsy and care-givers on seizure detection device and HR-QOL using an enriched population of electronic seizure diary users. Metrics related to quality of life and anxiety reduction were compared between users and nonusers of seizure detection devices.Results: Compared with nonusers of seizure detection devices, device users were significantly more likely to have been impacted by epilepsy in multiple HR-QOL domains, including anxiety, mood, emotional regulation/aggression, speech/language, sleep quality, social life, activities of daily living, independence, and education/academic potential. The majority (80.2%) of people using seizure detection devices experienced moderate or greater anxiety reduction from seizure detection device usage, while 11.1% reported that detection devices did not help at all with anxiety. Despite potential benefit, seizure detection devices were used only by a minority (21.8%) of people with epilepsy surveyed, and usage tended to be skewed toward younger patient age, higher income, and caregivers. There was no significant difference in overall HR-QOL between users and nonusers.Conclusions: Seizure detection devices provide moderate or greater anxiety reduction among the majority of people with epilepsy and their caregivers, but current translatability into improvements in overall HR-QOL may be limited. Affordability and technological support are potential barriers to maximizing benefit equally among the epilepsy community. These considerations may be useful to help guide future device development and inform patient-dinician discussions on device usage and HR-QOL. (C) 2020 Elsevier Inc. All rights reserved.