Experiences with premorbid SUDEP discussion among participants in the North American SUDEP Registry (NASR).
Epilepsy Behav
; 70(Pt A): 131-134, 2017 05.
Article
in En
| MEDLINE
| ID: mdl-28427020
ABSTRACT
The North American SUDEP Registry (NASR) is a repository of clinical data and biospecimens in cases of sudden unexpected death in epilepsy (SUDEP), a leading cause of epilepsy-related deaths. We assessed whether bereaved families were aware of SUDEP before their family member's death and their preferences for SUDEP disclosure. At enrollment, next-of-kin of SUDEP cases completed an intake interview, including questions assessing premorbid SUDEP discussions. Only 18.1% of the 138 next-of-kin recalled a previous discussion of SUDEP with a healthcare provider or support resource. Of the 112 who did not recall such a discussion, 72.3% wished it was discussed, 10.7% were satisfied it was not discussed, and 17% were unsure. A history of status epilepticus predicted SUDEP discussion. Rates of SUDEP discussion were not significantly higher among SUDEPs after 2013 (the approximate study midpoint) compared with those before then. Our study suggests that SUDEP remains infrequently discussed with family members of persons with epilepsy. Nearly three-quarters of family members wished they had known of SUDEP before the death. However, some were indifferent or were satisfied that this discussion had not occurred. We must balance more systematic education of patients and families about SUDEP while respecting individual preferences about having this discussion.
Key words
Full text:
1
Database:
MEDLINE
Main subject:
Family
/
Registries
/
Surveys and Questionnaires
/
Death, Sudden
/
Epilepsy
Type of study:
Etiology_studies
/
Prognostic_studies
/
Qualitative_research
/
Risk_factors_studies
Limits:
Adult
/
Female
/
Humans
/
Male
/
Middle aged
Country/Region as subject:
America do norte
Language:
En
Journal:
Epilepsy Behav
Journal subject:
CIENCIAS DO COMPORTAMENTO
/
NEUROLOGIA
Year:
2017
Type:
Article