Abstracts

Rationale: SUDEP is defined as sudden unexpected death in epilepsy. It is the most serious complication derived from seizures. Fear to cause emotional impact in patients with epilepsy (PWE), may discourage neurologists to inform about SUDEP, which is against patients´ right to be informed about their disease. Methods: Longitudinal prospective observational study. Consecutive PWE that visited an epilepsy office at a secondary hospital were encouraged to participate. We analyzed demographic features, previous knowledge of epilepsy and SUDEP, type of seizure / epileptic syndrome, etiology, and previous 6 month seizure frequency. Educational intervention on SUDEP was carried out in the first visit. In a second 6 month follow-up visit, we evaluated knowledge acquisition on SUDEP and seizure diary. We considered two groups: Group A: SUDEP knowledge (Answered > 6/10 questions correctly). Group B: no knowledge acquired. A satisfaction survey was conducted. Results: 47 patients agreed to participate. 45 patients completed the study. 27 were women. Age: 41 years (+/- 14). Focal epilepsy: 30. Generalized: 15. 89% showed high epilepsy knowledge. Only 1 patient knew what SUDEP was (2.2%). Follow-up visit: 58% acquired knowledge of SUDEP (Group A). Higher education was related to better knowledge acquisition (p = 0.0015). Patients in Group A had seizure frequency reduction in next 6 months after intervention (p = 0.019). From the 45 patients, only one would have liked not to be informed about SUDEP. All patients chose  their neurologist as the informant about SUDEP. Conclusions: Knowledge of SUDEP is scarce among patients with epilepsy. Providing information in epilepsy office is effective to acquire knowledge of SUDEP. Higher education facilitates knowledge acquisition.  SUDEP awareness could be related to a better seizure control. More research is needed to confirm these findings. Funding: None