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Knowing the risk of SUDEP: Two family's perspectives and The Danny Did Foundation
Author(s) -
Stevenson Mark J.,
Stanton Thomas F.
Publication year - 2014
Publication title -
epilepsia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.687
H-Index - 191
eISSN - 1528-1167
pISSN - 0013-9580
DOI - 10.1111/epi.12795
Subject(s) - worry , epilepsy , psychiatry , foundation (evidence) , psychology , nothing , medicine , pediatrics , history , anxiety , philosophy , archaeology , epistemology
Summary There is much debate in the epilepsy community about whether neurologists should discuss the risk of sudden unexpected death in epilepsy ( SUDEP ) with their patients and family members. Those in favor purport that patients have a right to know about SUDEP . Opponents say the risk is so low that discussions only worry patients and families, especially if there is nothing that can be done to prevent SUDEP . North American surveys show that the epilepsy community knows little about SUDEP and neurologists are unlikely to talk about it. However, surveys of those bereaved by SUDEP show that an overwhelming majority of the parents, spouses, and family members want to be told about SUDEP immediately after the diagnosis of epilepsy. This article is written by two families bereaved by SUDEP and their strong belief that neurologists should have the discussion about the risk of SUDEP soon after the diagnosis of epilepsy.