Sudden unexpected death in epilepsy: Knowledge and experience among U.S. and Canadian neurologists

Abstract

Importance Sudden unexpected death in epilepsy (SUDEP) is a common cause of mortality in patients with the disease but it is unknown how neurologists disclose this risk when counseling patients. Objective Examine SUDEP discussion practices of neurologists in the U.S. and Canada. Design An electronic, web-based survey was sent to 17558 neurologists in the U.S. and Canada. Survey questions included frequency of SUDEP discussion, reasons for discussing/not discussing SUDEP, timing of SUDEP discussions, and perceived patient reactions. We examined factors that influence the frequency of SUDEP discussion and perceived patient response using multivariate logistic regression. Setting Survey of U.S. and Canadian neurologists Participants Neurologists who completed post-graduate training and devoted >5% of their time to patient care. Results There was a response rate of 9.3%; 1200 respondents met eligibility criteria and 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 that independently predicted whether SUDEP was discussed nearly all of the time were: number of epilepsy patients seen annually (OR 2.01, 95% CI 1.20-3.37, p < 0.01) and if the respondent had a SUDEP case in the past 24 months (OR 2.27, 95% CI: 1.37-3.66, p < 0.01). A majority of respondents (59.5%) reported that negative reactions were the most common response to a discussion of SUDEP. Having additional epilepsy/neurophysiology training was associated with an increased risk of a perceived negative response (OR 1.36, CI: 1.02-1.82, p = 0.038) while years in practice (OR 0.85, CI: 0.77 - 0.95, p < 0.005) and seeing both adults and children (OR 0.15, CI: 0.032-0.74, p = 0.02) were associated with a decreased likelihood of negative response. Conclusions U.S. and Canadian neurologists rarely discuss SUDEP with all patients with epilepsy/caregivers though discussions are more likely among neurologists who frequently see epilepsy patients or had a recent SUDEP in their practice. Perceived negative reactions to SUDEP discussions are common but not universal; more experienced neurologists may be less likely to encounter negative reactions suggesting there may be ways to frame the discussion that minimizes patient/caregiver distress.

Automated detection of sudden unexpected death in epilepsy risk factors in electronic medical records using natural language processing

“…They described feeling shock from the unexpected death of their loved one and regret that they were unable to make informed decisions regarding epilepsy management and risk prevention. [16][17][18] To encourage providers to discuss SUDEP, several professional organizations have called for broader counseling of people with epilepsy about SUDEP, including the UK National Clinical Guideline Centre, 19 American Academy of Neurology (AAN), 10 and American Epilepsy Society (AES). 16 However, a minority provide such counseling regularly.…”

The SUDEP Risk Inventory: Association with postictal generalized EEG suppression

“…In a survey of US and Canadian neurologists, only 6.8% reported discussing SUDEP with nearly all (>90%) patients. Almost twice as many respondents (11.6%) reported never discussing it (Friedman et al, 2014). Part of the hesitancy may stem from a lack of objective biomarkers and inventories which accurately stratify risk.…”

Increasing Awareness of Sudden Death in Pediatric Epilepsy Together

“…Capable and skilled physicians do not often discuss mortality. 4, Yet, families wish to discuss these matters at the first visit, not later, and expect their doctor to do so. 5,6 This is part of our duty and responsibility as physicians.…”