Abstracts

Rationale: Given that Clinical Common Data Elements (CDEs) from other countries may not fit Korea's unique healthcare environment and patient demographics, and that Korean hospitals have shorter consultation times due to high patient volume and low reimbursement rates, highlighting the need for efficient CDEs for rapid and comprehensive data collection, we will utilize the Delphi methodology to develop clinical CDEs for Korean epilepsy patients.

Methods: We utilized the Delphi method to develop clinical Common Data Elements (CDEs). The steering committee defined initial CDE items, categorizing them into follow-up notes for returning patients and initial/periodic evaluations for new or updated patient information. A panel of epilepsy experts, primarily neurologists, was assembled, maintaining anonymity to ensure objective responses. Participants were recruited from university-affiliated epileptologists, most with epilepsy-specific training.
The process involved three survey rounds to finalize the CDE items. Data analysis identified items with less than 67% agreement, which were refined for subsequent rounds. The final results were used to finalize the CDE items.

Results: Out of 68 epilepsy specialists contacted via email, 61 (89.7%) participated. The median number of new patients per session was 2 (IQR, 1-3) with a median consultation time of 10 minutes (IQR, 10-15 minutes). For returning patients, the median number was 20 (IQR, 12-30) with a median consultation time of 4 minutes (IQR, 2-5 minutes).
In Round 3, the final survey evaluated the importance of various items for follow-up notes and initial/periodic evaluations. High agreement for inclusion in clinical practice was achieved for several items. For follow-up notes, items such as seizure frequency, last seizure occurrence, precipitating factors, side effects, pregnancy, and medication changes received high agreement. For initial/periodic evaluations, items including seizure onset, aura, semiology, seizure classification, seizure frequency, epilepsy classification, etiology, syndrome, precipitating factors, alcohol use, family history, comorbid conditions, EEG findings, MRI findings, medication changes (discontinuation), ASM adverse events, drug-resistant epilepsy, non-pharmacological treatments, status epilepticus, and driving status were highly agreed upon.
Overall, 98% of participants agreed on the necessity of the clinical CDEs, and 97% indicated their willingness to use them if integrated into electronic medical records. These results highlight the relevance and usability of the CDEs in clinical practice for managing epilepsy patients.


Conclusions: The high agreement among participants on the necessity and usability of clinical Common Data Elements (CDEs) underscores their crucial role in improving care quality for Korean epilepsy patients by enabling efficient management, accurate documentation, and better patient outcomes.

Funding: This research was supported by a grant of the Korea Health Technology R&D Project through the Korea Health Industry Development Institute (KHIDI), funded by the Ministry of Health & Welfare, Republic of Korea (grant number : RS-2023-KH139976).