Thirty percent of patients surveyed admitted that
SUDEP disclosure made them more frightened. “This
is particularly interesting because most physicians are a
little hesitant to discuss this due to fear,” Ms. Long said.
“However, 100% of the 30% still felt it was their right
to be informed.”
When asked when patients should be informed,
90% of patients felt they should be informed shortly
after diagnosis, and 50% felt that they should be in-
formed about SUDEP at first diagnosis.
“Patients not only want to be informed about SUDEP,
they actually feel it is their right to be informed,” Ms. Long
said. “In our study, patients felt that physicians should be
responsible for disclosing SUDEP and that SUDEP aware-
ness motivated them to be more compliant and also to
better manage those factors that lower seizure threshold.”
In summation, Ms. Long cautioned against
generalizing her study findings. “These were pa-
tients with a long-standing history of epilepsy— 10
years or longer. These were not patients who were
newly diagnosed. But a very interesting find-
ing is that 50% felt they should be informed at
first diagnosis.” NR
—Glenn S. Williams
Keddie S, Angus-Leppan H, Parker T, et al. Discussing sudden unexpected
death in epilepsy: are we empowering our patients? A questionnaire survey. JRSM Open. 2016; 7( 9):2054270416654358.
Xu Z, Ayyappan S, Seneviratne U. Sudden unexpected death in epilepsy (SUDEP): what do patients think? Epilepsy Behav. 2015;42:
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