PDF(Pubmed)
Abstract：
Recent developments in technology and exigencies of the COVID-19 pandemic have spurred innovations for telehealth in patients with rare epilepsies. This review details the many ways telehealth may be used in the diagnosis and management of rare, pharmacoresistant epilepsy and documents our experience as measured by surveying caregivers of pediatric patients with epilepsy. Most components of the epilepsy evaluation, including history and examination, neuroimaging, and electroencephalogram (EEG) can be performed or reviewed remotely, assuming similar technique and quality of diagnostic studies. Seizure and epilepsy diagnosis is enhanced through the assistance of caregiver smart phone video recordings and \'ambulatory\' EEG. Monitoring patient seizure frequency through paper seizure diaries is now increasingly being replaced by electronic diaries in both clinical and research settings. Electronic seizure diaries have numerous advantages such as data durability, increased accessibility, real-time availability, and easier analysis. Telehealth enhances access to specialized epilepsy care, which has been shown to reduce mortality and improve patient compliance and outcomes. Telehealth can also enable evaluation of patients with rare epilepsy in centers of excellence and enhance enrollment in clinical trials. Reducing mortality risk in patients with epilepsy can be accomplished through remote counseling and addressing psychiatric co-morbidities. Findings from surveying caregivers of children with epilepsy treated at Children\'s National Hospital showed that 54/56 (96.4%) found that not having to commute to the appointment positively contributed to their telemedicine experience. Overall, most respondents had a positive experience with their telemedicine visit. Almost all respondents (98%) were either \'very happy\' or \'happy\' with their telemedicine visit and their ability to communicate over telemedicine with the provider and either \'very likely\' or \'likely\' to want to use telemedicine for some future clinic visits. Telehealth in rare epilepsies is feasible and, in many ways, comparable with traditional evaluation and management.
Telehealth for patients with rare epilepsies Recent technological advancements and constraints caused by the COVID-19 pandemic have spurred innovations for telehealth in patients with rare epilepsies. This review details the many ways telehealth may be used in the diagnosis and management of rare, drug-resistant epilepsy and documents our experience as measured by surveying caregivers of pediatric patients with epilepsy. Most components of the epilepsy evaluation can be performed or reviewed remotely, assuming similar technique and quality of diagnostic studies. Seizure and epilepsy diagnosis is enhanced through the assistance of caregiver smart phone video recordings and ‘ambulatory’ electroencephalogram (EEG). Monitoring patient seizure frequency through paper seizure diaries is now increasingly being replaced by electronic diaries in both clinical and research settings. Electronic seizure diaries have numerous advantages such as data durability, increased accessibility, real-time availability, and easier analysis. Telehealth enhances access to specialized epilepsy care, which has been shown to reduce mortality and improve patient compliance and outcomes. Telehealth can also enable evaluation of patients with rare epilepsy in centers of excellence and enhance enrollment in clinical trials. Reducing mortality risk in patients with epilepsy can be accomplished through remote counseling and addressing related mental health issues. Findings from surveying caregivers of children with epilepsy treated at Children’s National Hospital showed that most respondents found not having to commute to the appointment positively contributed to their telemedicine experience. Almost all respondents were either ‘very happy’ or ‘happy’ with their telemedicine visit and their ability to communicate over telemedicine with the provider and either ‘very likely’ or ‘likely’ to want to use telemedicine for some future clinic visits. Telehealth in rare epilepsies is feasible and, in many ways, comparable with traditional evaluation and management.
Telehealth for patients with rare epilepsies Recent technological advancements and constraints caused by the COVID-19 pandemic have spurred innovations for telehealth in patients with rare epilepsies. This review details the many ways telehealth may be used in the diagnosis and management of rare, drug-resistant epilepsy and documents our experience as measured by surveying caregivers of pediatric patients with epilepsy. Most components of the epilepsy evaluation can be performed or reviewed remotely, assuming similar technique and quality of diagnostic studies. Seizure and epilepsy diagnosis is enhanced through the assistance of caregiver smart phone video recordings and ‘ambulatory’ electroencephalogram (EEG). Monitoring patient seizure frequency through paper seizure diaries is now increasingly being replaced by electronic diaries in both clinical and research settings. Electronic seizure diaries have numerous advantages such as data durability, increased accessibility, real-time availability, and easier analysis. Telehealth enhances access to specialized epilepsy care, which has been shown to reduce mortality and improve patient compliance and outcomes. Telehealth can also enable evaluation of patients with rare epilepsy in centers of excellence and enhance enrollment in clinical trials. Reducing mortality risk in patients with epilepsy can be accomplished through remote counseling and addressing related mental health issues. Findings from surveying caregivers of children with epilepsy treated at Children’s National Hospital showed that most respondents found not having to commute to the appointment positively contributed to their telemedicine experience. Almost all respondents were either ‘very happy’ or ‘happy’ with their telemedicine visit and their ability to communicate over telemedicine with the provider and either ‘very likely’ or ‘likely’ to want to use telemedicine for some future clinic visits. Telehealth in rare epilepsies is feasible and, in many ways, comparable with traditional evaluation and management.
摘要：
COVID-19大流行的技术和紧急情况的最新发展刺激了罕见癫痫患者远程医疗的创新。这篇综述详细介绍了远程医疗可用于罕见疾病的诊断和管理的多种方式，药物耐药性癫痫，并通过调查小儿癫痫患者的护理人员来记录我们的经验。癫痫评估的大多数组成部分，包括历史和考试，神经影像学,脑电图（EEG）可以远程执行或检查，假设诊断研究的技术和质量相似。癫痫发作和癫痫的诊断是通过照顾者的智能手机视频记录和\'流动\'脑电图的协助加强。现在，在临床和研究环境中，通过纸质癫痫发作日记监测患者癫痫发作频率正越来越多地被电子日记所取代。电子扣押日记具有许多优点，例如数据耐久性，增加可达性，实时可用性，更容易分析。远程医疗增强了获得专门的癫痫护理的机会，已被证明可以降低死亡率并改善患者的依从性和预后。远程医疗还可以在卓越中心对罕见癫痫患者进行评估，并增加临床试验的入学率。降低癫痫患者的死亡风险可以通过远程咨询和解决精神病合并症来实现。在儿童国家医院接受治疗的癫痫患儿的护理人员的调查结果显示，54/56（96.4％）发现不必通勤对他们的远程医疗体验有积极的贡献。总的来说,大多数受访者对远程医疗访问有积极的体验。几乎所有受访者（98％）对他们的远程医疗访问以及他们与提供者进行远程医疗交流的能力以及“非常可能”或“可能”希望使用远程医疗进行一些未来的临床访问。罕见癫痫的远程医疗是可行的，在许多方面,与传统的评估和管理相当。
罕见癫痫患者的远程医疗最近由COVID-19大流行引起的技术进步和限制刺激了罕见癫痫患者远程医疗的创新。这篇综述详细介绍了远程医疗可用于罕见疾病的诊断和管理的多种方式，耐药性癫痫，并通过调查小儿癫痫患者的护理人员来记录我们的经验。癫痫评估的大多数组成部分可以远程进行或检查，假设诊断研究的技术和质量相似。癫痫发作和癫痫诊断通过护理人员智能手机视频记录和“移动”脑电图（EEG）的协助得到加强。现在，在临床和研究环境中，通过纸质癫痫发作日记监测患者癫痫发作频率正越来越多地被电子日记所取代。电子扣押日记具有许多优点，例如数据耐久性，增加可达性，实时可用性，更容易分析。远程医疗增强了获得专门的癫痫护理的机会，已被证明可以降低死亡率并改善患者的依从性和预后。远程医疗还可以在卓越中心对罕见癫痫患者进行评估，并增加临床试验的入学率。降低癫痫患者的死亡风险可以通过远程咨询和解决相关的心理健康问题来实现。在儿童国家医院接受治疗的癫痫患儿的护理人员的调查结果显示，大多数受访者发现不必通勤对他们的远程医疗体验做出了积极贡献。几乎所有受访者都对他们的远程医疗访问以及他们与提供者通过远程医疗进行通信的能力“非常满意”或“满意”，并且“非常有可能”或“可能”希望使用远程医疗进行一些未来的临床访问。罕见癫痫的远程医疗是可行的，在许多方面,与传统的评估和管理相当。
罕见癫痫患者的远程医疗最近由COVID-19大流行引起的技术进步和限制刺激了罕见癫痫患者远程医疗的创新。这篇综述详细介绍了远程医疗可用于罕见疾病的诊断和管理的多种方式，耐药性癫痫，并通过调查小儿癫痫患者的护理人员来记录我们的经验。癫痫评估的大多数组成部分可以远程进行或检查，假设诊断研究的技术和质量相似。癫痫发作和癫痫诊断通过护理人员智能手机视频记录和“移动”脑电图（EEG）的协助得到加强。现在，在临床和研究环境中，通过纸质癫痫发作日记监测患者癫痫发作频率正越来越多地被电子日记所取代。电子扣押日记具有许多优点，例如数据耐久性，增加可达性，实时可用性，更容易分析。远程医疗增强了获得专门的癫痫护理的机会，已被证明可以降低死亡率并改善患者的依从性和预后。远程医疗还可以在卓越中心对罕见癫痫患者进行评估，并增加临床试验的入学率。降低癫痫患者的死亡风险可以通过远程咨询和解决相关的心理健康问题来实现。在儿童国家医院接受治疗的癫痫患儿的护理人员的调查结果显示，大多数受访者发现不必通勤对他们的远程医疗体验做出了积极贡献。几乎所有受访者都对他们的远程医疗访问以及他们与提供者通过远程医疗进行通信的能力“非常满意”或“满意”，并且“非常有可能”或“可能”希望使用远程医疗进行一些未来的临床访问。罕见癫痫的远程医疗是可行的，在许多方面,与传统的评估和管理相当。
