Objective:

To assess the knowledge of Neurology physicians, physician trainees, and mid-level providers about SUDEP (sudden unexpected death in epilepsy) and their respective practice of incorporating SUDEP discussion in patient care.

Background:

Although SUDEP is the leading cause of disease-related death in epilepsy patients, the risk of sudden unexpected death in epilepsy (SUDEP) is not consistently discussed. The reasoning for limiting discussion has been attributed to minimizing anxiety-inducing information for low-risk epilepsy patients. Also, it has been suggested that physicians may not be aptly trained to deliver such news in an ethical manner and may be lacking appropriate resources to give patients regarding this topic.

Design/Methods:

As part of a quality improvement project to improve shared decision making in the neurology clinic, a 12-question, online questionnaire graded on the 5-point Likert scale was distributed via email to 63 neurology trainees, neurology physicians, and neurology mid-level providers (MLP). Participation was voluntary and anonymous. Survey questions gauged participants’ degree of exposure to epilepsy patients, degree of comfort recognizing and discussing SUDEP risk with patients, and opinion on availability of SUDEP educational resources. Participants had 3 weeks to complete the survey. Descriptive and statistical analysis was done.

Results:

Survey had a 31.7% response rate (n=20 respondents out of 63 surveyed). 95% of respondents worked with adult epilepsy patients. 77% were residents/fellows, 23% were Neurology Attendings. 80% of respondents strongly agreed/agreed that SUDEP is a topic that should be discussed with patients (P <0.005). However, 70% of respondents strongly disagreed/disagreed (P <0.05) that they had the adequate resources in the clinic (electronic or printed) to give to their patients which would help facilitate education about SUDEP.

Conclusions:

In the adult epilepsy patient population Neurology physicians feel that SUDEP should be discussed with patients and their families, however, also feel that they are lacking the adjunctive resources to do so.