Higson Lana, Finnin Natasha, Nurse Ewan, Cook Mark J, Winton-Brown Toby, Rayner Genevieve, Coleman Honor
Department of Neuroscience, Monash University, Melbourne, Victoria, Australia.
Department of Neurology, Alfred Hospital, Melbourne, Victoria, Australia.
Epilepsia. 2025 Sep;66(9):3385-3397. doi: 10.1111/epi.18491. Epub 2025 Jun 16.
Factors that can precipitate and/or prolong functional seizure events are often challenging to identify. We aimed to develop a methodology to investigate peri-ictal behaviors in subjects experiencing functional seizures and those around them in their home environment.
We conducted an iterative, four-phase process to develop a codebook for operationalizing peri-functional seizure behavior that involved observation of 37 functional seizures across 14 participants in the pre-ictal, ictal, and post-ictal phases. First, researchers reviewed and discussed the literature to devise a conceptual framework. Second, an initial codebook was drafted and refined using a test case. Third, a multi-disciplinary panel provided feedback on the coding of three further cases to further refine code definitions. Finally, the drafted codebook was piloted on 20 functional seizure events, and a discrepancy analysis was conducted. Additional exploratory analyses were conducted with the pilot data, including a correlation analysis between the number of individuals present during pre-ictal and ictal phases and seizure duration.
The final codebook identifies five main factors for observers to note across the pre-ictal, ictal, and post-ictal phases of a functional seizure: body position, activity, behavior, nature of interaction, and number of bystanders; detailed definitions of the relevant subcodes are provided. Early exploratory analyses found that the more people present during the ictal phase, the longer the functional seizure tended to be (r = .61, p = .004).
This is the first study to highlight the feasibility of investigating functional seizure peri-ictal behavior in a home environment, offering unique benefits to capture naturalistic social factors potentially related to seizure activity. The codebook can be validated in larger datasets to improve our understanding of how peri-ictal behavior impacts functional seizures; compare findings across studies; and inform the development of evidence-based seizure management strategies for individuals and their carers.
能够引发和/或延长功能性癫痫发作事件的因素往往难以识别。我们旨在开发一种方法，以调查功能性癫痫发作患者及其家中周围人员的发作期周围行为。
我们进行了一个迭代的四阶段过程，以制定一个用于对功能性癫痫发作期周围行为进行操作化的编码手册，该过程涉及观察14名参与者的37次功能性癫痫发作的发作前期、发作期和发作后期。首先，研究人员回顾并讨论了文献，以设计一个概念框架。其次，使用一个测试案例起草并完善了初始编码手册。第三，一个多学科小组对另外三个案例的编码提供了反馈，以进一步完善编码定义。最后，在20次功能性癫痫发作事件上对起草的编码手册进行了试点，并进行了差异分析。对试点数据进行了额外的探索性分析，包括发作前期和发作期在场人数与癫痫发作持续时间之间的相关性分析。
最终的编码手册确定了观察者在功能性癫痫发作的发作前期、发作期和发作后期需要注意的五个主要因素：身体姿势、活动、行为、互动性质和旁观者数量；并提供了相关子编码的详细定义。早期探索性分析发现，发作期在场的人越多，功能性癫痫发作往往持续时间越长（r = 0.61，p = 0.004）。
这是第一项强调在家庭环境中调查功能性癫痫发作期周围行为可行性的研究，为捕捉可能与癫痫发作活动相关的自然社会因素提供了独特的优势。该编码手册可在更大的数据集中进行验证，以增进我们对发作期周围行为如何影响功能性癫痫发作的理解；比较不同研究的结果；并为为个人及其护理人员制定基于证据的癫痫管理策略提供参考。
