Koo Yong Seo, Kim Tae Young, Lee Seo-Young, Lee Woo-Jin, Kim Hunmin, Shon Young-Min
Department of Neurology, Asan Medical Center, Seoul, South Korea.
Interdisciplinary Graduate Program in Medical Bigdata Convergence, Kangwon National University, Chuncheon, South Korea; Department of Neurology, Myongji Hospital, Goyang, South Korea.
Seizure. 2025 Apr;127:50-56. doi: 10.1016/j.seizure.2025.03.008. Epub 2025 Mar 12.
We aimed to develop a core set of common data elements (CDEs) for routine epilepsy care to enhance consistency and efficiency within time-limited clinical environments.
We employed a modified Delphi method involving epileptologists from university-affiliated hospitals. Participants rated the feasibility and importance of proposed CDEs over three survey rounds. The primary objective was to create feasible CDEs for EHR integration that capture essential clinical information during 5-10-minute consultations. Participant feedback guided iterative refinements, culminating in two templates: follow-up notes and initial/periodic evaluations.
Of the 68 invited epileptologists, 61 (89.7 %) participated. In Round 1, consensus (≥67 % agreement) was achieved on 5 of 6 CDEs for follow-up notes and 22 of 28 for initial/periodic evaluations. After three rounds, consensus was reached on 6 follow-up note CDEs and 20 initial/periodic evaluation CDEs, including seizure frequency, date of last seizure, and medication changes. Most participants endorsed the necessity (98 %) of clinical CDEs and intended to implement them (97 %).
These core CDEs provide a practical, consensus-based framework for standardizing epilepsy care in South Korea under short consultation constraints. They can improve consistency and quality of care across institutions. Future initiatives will expand the CDEs to other patient subgroups, integrate patient-reported outcomes, and embed the templates in EHR systems for clinical and research applications.
我们旨在开发一套用于常规癫痫护理的通用数据元素（CDE）核心集，以提高在时间有限的临床环境中的一致性和效率。
我们采用了一种改良的德尔菲法，邀请了来自大学附属医院的癫痫专家参与。参与者在三轮调查中对提议的CDE的可行性和重要性进行评分。主要目标是创建可行的CDE以便整合到电子健康记录（EHR）中，从而在5 - 10分钟的会诊期间获取基本临床信息。参与者的反馈指导了迭代优化，最终形成了两个模板：随访记录和初始/定期评估。
在受邀的68位癫痫专家中，61位（89.7%）参与了调查。在第一轮中，随访记录的6个CDE中有5个、初始/定期评估的28个CDE中有22个达成了共识（≥67%的一致意见）。经过三轮后，在6个随访记录CDE和20个初始/定期评估CDE上达成了共识，包括癫痫发作频率、最后一次发作日期和药物变化。大多数参与者认可临床CDE的必要性（98%）并打算实施它们（97%）。
这些核心CDE为在韩国短时间会诊限制下规范癫痫护理提供了一个基于共识的实用框架。它们可以提高各机构护理的一致性和质量。未来的举措将把CDE扩展到其他患者亚组，整合患者报告的结果，并将模板嵌入EHR系统用于临床和研究应用。
