The Importance of SUDEP Education. a Single Center Experience
Abstract number :
3.351
Submission category :
4. Clinical Epilepsy / 4D. Prognosis
Year :
2024
Submission ID :
36
Source :
www.aesnet.org
Presentation date :
12/9/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: Joaquin Ojeda, MD – Hospital Universitario Infanta Sofia
Jorge Maza, MD – Hospital Universitario Infanta Sofía
Susana Lopez Gallardo, MD – CS Santa Hortensia
Maria Jose Abenza, MD – Hospital Universitario Infanta Sofia
Francisco Navacerrada, MD – Hospital Universitario Infanta Sofia
Ambrosio Miralles, MD – Hospital Universitario Infanta Sofia
Rationale: SUDEP is defined as sudden unexplained death in epilepsy. It is the most serious complication in epilepsy. Fear to cause emotional impact in patients with epilepsy (PWE) may discourage neurologists to inform about SUDEP.
Methods: Longitudinal prospective observational study. Consecutive PWE that visited an epilepsy office at a secondary hospital were included. Baseline, 6 month and 5 year visits. We analyzed demographic data, previous epilepsy and SUDEP knowledge, type of seizure/epilepsy, etiology, and seizure frequency at each visit. Educational intervention on SUDEP was carried out in the first visit. Knowledge acquisition on SUDEP and seizure registry was assessed in 6m and 5y visit. To groups considered: A: SUDEP knowledge acquired (Answered > 6/10 questions correctly). B: no knowledge acquired. A satisfaction survey was conducted.
Results: 47 patients agreed to participate. 45 patients completed two visits, 40 patients completed three visits. Sample Characteristics: 27 women Age: 41 years (+/- 14). Epilepsy: Focal: 32. Generalized: 15. Seizure types: focal only (w o w/o loss of awareness): 10; Generalized TC: 15; Focal and Focal to bilateral: 22.
Epilepsy Knowledge: 89% showed high rate in epilepsy knowledge (answered correctly more than 6 of 10 items). SUDEP Knowledge: Only 1 patient knew what SUDEP was (2.2%). Follow up visit SUDEP Knowledge (acquisition): Two groups were identified: -A group: SUDEP knowledge acquired (Answered > 6/10 questions correctly): 6months, 26/45 patients (58%). 5 years, 22/40 p (55%) -B group: no knowledge acquired. 6m: 19/45 patient (42%). 5 years, 18/40 (45%). Higher education is related to knowledge acquisition (p = 0.018). Patients in A group had seizure frequency reduction in next 6 months (p = 0.019) and 5 years (p = 0.04) after intervention in comparison to B group. Information preferences (professional-site): All patients choose neurologists as the preferred agent responsible of providing SUDEP information. Only one patient would have liked not to be informed about SUDEP at 6month visit, and non at 5 year visit.
Conclusions: Knowledge on SUDEP is scarce despite knowledge in epilepsy is not among patients with epilepsy. Providing information in the epilepsy clinic is effective on SUDEP awareness and knowledge.
Higher education level facilitates knowledge acquisition. Being aware of SUDEP could be related to a better seizure control. More studies are necessary to confirm these results.
Funding: non
Clinical Epilepsy