Knowledge and Attitudes About Sudden Unexpected Death in Epilepsy (SUDEP) Among Epileptic Patients and Their Neurologists: A Cross-Sectional Study
Yasmeena Kozaa1, Mohammad Abuawwad2, Mohammad Jehad Taha2, Mohammed Bakr Alsehili1, Mohamed Arafa Shady1, Ahmed Reda Abdelmeguid Moustafa1, Nada Mahmoud Abdelkarim1, Youstina Mohsen1, Mohamed Saad Rakab1, Mohamed Ragab ElDessouki1, Osama Ahmed Elshafei3, Hend Salama Abo Helow4
1Mansoura Manchester Programme For Medical Education, Faculty of Medicine, Mansoura University, Mansoura, Egypt, 2Kasr Alainy School of Medicine, Cairo University, 3Neurology department, Mansoura University Hospital, 4Faculty of Medicine, Alazhar University of Gaza
Objective:
This study evaluates the perspectives of both patients and neurologists on SUDEP discussion.
Background:
Sudden unexpected death in epilepsy (SUDEP) is a major cause of mortality in epilepsy. yet healthcare professionals infrequently discuss SUDEP with patients due to concerns about causing psychological distress .Effective management of SUDEP risk depends on a solid understanding of SUDEP and its associated risk factors.
Design/Methods:
We assessed 173 adult patients with epilepsy, who attended Neurology clinic at Mansoura university hospital between 20th of August to 20th of September, and were surveyed to ascertain their understanding and their desire to know about SUDEP. Additionally, 25 of the neurologists working there were surveyed to assess their knowledge about SUDEP and factors affecting their willingness to initiate SUDEP discussion.
Results:
Of patients, 84.4% had never heard of Sudden Unexpected Death in Epilepsy (SUDEP). None of patient risk factors of SUDEP such as generalized epilepsy (OR=2.19,95% confidence interval 0.64–7.496, p=0.212), and duration of epilepsy >15 years (OR=0.713 ,95% CI: 0.202–2.517, p=0.599 ) were significant predictors of the patients' awareness of SUDEP. Most participants (74.6%) preferred receiving detailed information about SUDEP, 96.4% of participants preferred to obtain information about SUDEP from a neurologist. While 65.4% of the neurologists “rarely” or “never” discussed it. 57.7% of neurologists justified not discussing SUDEP as the information could affect my patient's quality of life. Based on their selection of known risk factors, 73.1% of neurologists were considered as having insufficient knowledge of SUDEP. Participants with sufficient knowledge of SUDEP also do not show a significant difference in discussion frequency compared to those with insufficient knowledge (p=0.893).
Conclusions:
Our study shows that the majority of patients wish to be informed about SUDEP which contrasts with the reluctance and lack of knowledge among medical professionals to inform all patients about this condition.
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