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Epilepsy Behav. 2014 Jun;35:13-8. doi: 10.1016/j.yebeh.2014.03.022. Epub 2014 May 3.

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

Author information

1
Comprehensive Epilepsy Center, Department of Neurology, NYU Langone Medical Center, New York, NY, USA. Electronic address: Daniel.Friedman@nyumc.org.
2
Department of Pediatrics, Faculty of Medicine, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
3
Department of Biostatistics, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
4
Stormlabs Consulting, Boulder, CO, USA.
5
Comprehensive Epilepsy Center, Department of Neurology, NYU Langone Medical Center, New York, NY, USA.

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:

This study aimed at examining SUDEP discussion practices of neurologists in the U.S. and Canada.

DESIGN:

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.

PARTICIPANTS:

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.

KEYWORDS:

Counseling; Disclosure; Education; SUDEP

PMID:
24785429
PMCID:
PMC4176608
DOI:
10.1016/j.yebeh.2014.03.022
[Indexed for MEDLINE]
Free PMC Article

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