Abstracts

Rationale: Several groups have suggested that all patients with seizure disorders and their caregivers be counseled about sudden unexpected death in epilepsy (SUDEP) though some authors have expressed concern about universal discussions due to fear of creating unnecessary distress for those who are at low risk. Little is known about the current SUDEP discussion practices of neurologists in the U.S. and Canada. Methods: An electronic, web-based survey to assess knowledge and experience with SUDEP and discussing SUDEP with patients/caregivers was sent to 17558 neurologists in the US and Canada. Survey questions included years in practice, type of practice, training experience and average number of epilepsy followed annually, number of SUDEP cases in past the 24 months, frequency of SUDEP discussion, reasons for discussing/not discussing SUDEP, timing of SUDEP discussions, and perceived patient reactions. We examined factors which influence the frequency of SUDEP discussion and a perceived negative patient response using multivariate logistic regression. Results: There were 1200 completed surveys. Only 6.8% of respondents discussed SUDEP with nearly all (>90% of the time) of their patients with epilepsy/caregivers while 11.6% never discussed it. Factors which independently predicted whether SUDEP was discussed nearly all of the time were number of epilepsy patients seen annually (OR 1.27, 1.01-1.59 95% CI, p = 0.043) and if the respondent had a SUDEP case in the past 24 months (OR 2.33, 1.42-3.81, p = 0.0008). The most common reported patient reaction to SUDEP discussion was "anxiety." Negative reactions were reported as most common by 59.5% of respondents. Frequency of SUDEP discussion was independently associated with an increased likelihood of a negative perceived reaction (OR 1.19, 1.04-1.39, p = 0.015) while years in practice was associated with a decreased likelihood of negative reaction (OR 0.41, 0.24-0.70, p = 0.0011). Conclusions: U.S. and Canadian neurologists rarely discuss SUDEP with all of their patients with epilepsy/caregivers though discussions are more common among neurologists who see frequently see epilepsy patients and have had a recent SUDEP in their practice. Perceived negative reactions to SUDEP discussions are common but not universal; more experienced neurologists are less likely to encounter negative reactions suggesting there may be ways to frame the discussion of this important but thankfully rare outcome of epilepsy in a way that minimizes patient/caregiver distress.