Establishing essential clinical data elements for efficient epilepsy care in time-limited settings

Abstract

Purpose

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.

Methods

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.

Results

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 %).

Conclusion

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.