Sudden unexpected death in epilepsy: knowledge and experience among U.S. and Canadian neurologists.
OBJECTIVE
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
This study aimed at examining SUDEP discussion practices of neurologists in the U.S. and Canada.


METHODS
An electronic, web-based survey was sent to 17,558 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.


METHODS
The participants of this study were neurologists who completed postgraduate 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 the 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 the following: number of patients with epilepsy 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, 95% CI=1.02-1.82, p=0.038), while years in practice (OR=0.85, 95% CI=0.77-0.95, p<0.005) and seeing both adults and children were associated with a decreased likelihood of negative response (OR=0.15, 95% CI=0.032-0.74, p=0.02).


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 patients with epilepsy 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 that there may be ways to frame the discussion that minimizes patient/caregiver distress.
Comprehensive Epilepsy Center, Department of Neurology, NYU Langone Medical Center, New York, NY, USA. Electronic address: Daniel.Friedman@nyumc.org.
Daniel
D
Friedman
Department of Pediatrics, Faculty of Medicine, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
Elizabeth J
EJ
Donner
Department of Biostatistics, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
Derek
D
Stephens
Stormlabs Consulting, Boulder, CO, USA.
Cyndi
C
Wright
Comprehensive Epilepsy Center, Department of Neurology, NYU Langone Medical Center, New York, NY, USA.
Orrin
O
Devinsky
D000328:Adult; D002170:Canada / Q000453:epidemiology; D017028:Caregivers / Q000523:psychology; D003645:Death, Sudden / Q000453:epidemiology* / Q000209:etiology*; D004827:Epilepsy / Q000150:complications* / Q000453:epidemiology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006306:Health Surveys; D006801:Humans; D020407:Internet / Q000706:statistics & numerical data; D008297:Male; D009462:Neurology / Q000706:statistics & numerical data; D010820:Physicians / Q000523:psychology*; D014481:United States / Q000453:epidemiology
Counseling; Disclosure; Education; SUDEP