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癫痫儿童的癫痫发作行动计划:采用情况、决定因素,以及父母对移动应用程序的兴趣。

Seizure action plans in the pediatric population with epilepsy: Uptake, determinants, and parental interest in a mobile application.

机构信息

University of British Columbia and British Columbia Children's Hospital, Division of Neurology, Department of Pediatrics, Vancouver, BC, Canada.

University of British Columbia, British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.

出版信息

Epilepsy Behav. 2021 Apr;117:107860. doi: 10.1016/j.yebeh.2021.107860. Epub 2021 Mar 12.

Abstract

BACKGROUND

Status epilepticus (SE) is a common pediatric neurological emergency that requires timely treatment to minimize morbidity and mortality, yet administration of rescue medications is often delayed and underdosed. Seizure action plans (SAPs) outline the steps that should be taken by parents and caregivers in case of SE in order to optimize patient outcomes. Our study determined the uptake of SAPs in a pediatric population with epilepsy and assessed parental interest in a SAP mobile application.

METHODS

A survey was distributed to parents of patients with epilepsy aged 1 month to 19 years at British Columbia Children's Hospital. Following chart review, univariate and multivariate analyses were performed to identify variables that predict whether patients have SAPs. A systematic search of available mobile applications for epilepsy management was conducted.

RESULTS

Of 192 participants, 62% have SAPs. On univariate analysis, history of prior SE and male gender increased likelihood of SAP. On logistic regression, Nagelkerke R was 0.204 and our model correctly predicted 82% of patients with SAPs. 83% of parents were interested in a SAP mobile application. There are currently 40 mobile applications available for epilepsy management, but only 15% of respondents reported using them.

CONCLUSIONS

There is a need to increase the percentage of patients with epilepsy with SAPs, particularly in those at greater risk of SE. Most parents would find a SAP mobile application valuable in their child's epilepsy management. There is a gap between the high parental interest in mobile applications for epilepsy management and their current use of such applications.

摘要

背景

癫痫持续状态(SE)是一种常见的儿科神经系统急症,需要及时治疗以最大限度地降低发病率和死亡率,但抢救药物的给药往往延迟且剂量不足。癫痫发作行动计划(SAP)概述了父母和照顾者在 SE 发生时应采取的步骤,以优化患者的结局。我们的研究确定了癫痫儿科患者中 SAP 的采用情况,并评估了家长对 SAP 移动应用程序的兴趣。

方法

在不列颠哥伦比亚省儿童医院,向年龄在 1 个月至 19 岁的癫痫患儿的父母分发了一份调查问卷。在进行图表审查后,进行了单变量和多变量分析,以确定预测患者是否有 SAP 的变量。对现有的癫痫管理移动应用程序进行了系统搜索。

结果

在 192 名参与者中,有 62%的人有 SAP。在单变量分析中,SE 病史和男性性别增加了 SAP 的可能性。在逻辑回归中,Nagelkerke R 为 0.204,我们的模型正确预测了 82%有 SAP 的患者。83%的家长对 SAP 移动应用程序感兴趣。目前有 40 个用于癫痫管理的移动应用程序,但只有 15%的受访者报告使用过。

结论

需要增加有 SAP 的癫痫患者的比例,特别是在那些有更高 SE 风险的患者中。大多数家长认为 SAP 移动应用程序对他们孩子的癫痫管理很有价值。在家长对癫痫管理移动应用程序的高兴趣和他们目前对这些应用程序的使用之间存在差距。

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