Genetic causal attribution of epilepsy and its implications for felt stigma.
OBJECTIVE
Research in other disorders suggests that genetic causal attribution of epilepsy might be associated with increased stigma. We investigated this hypothesis in a unique sample of families containing multiple individuals with epilepsy.


METHODS
One hundred eighty-one people with epilepsy and 178 biologic relatives without epilepsy completed a self-administered survey. In people with epilepsy, felt stigma was assessed through the Epilepsy Stigma Scale (ESS), scored 1-7, with higher scores indicating more stigma and >4 indicating some felt stigma. Felt stigma related to having epilepsy in the family was assessed through the Family Epilepsy Stigma Scale (FESS), created by replacing "epilepsy" with "epilepsy in my family" in each ESS item. Genetic attribution was assessed through participants' perceptions of the (1) role of genetics in causing epilepsy in the family, (2) chance they had an epilepsy-related mutation, and (3) (in people with epilepsy) influence of genetics in causing their epilepsy.


RESULTS
Among people with epilepsy, 22% met criteria for felt stigma (ESS score >4). Scores were increased among individuals who were aged ≥60 years, were unemployed, reported epilepsy-related discrimination, or had seizures within the last year or >100 seizures in their lifetime. Adjusting for other variables, ESS scores in people with epilepsy were significantly higher among those who perceived genetics played a "medium" or "big" role in causing epilepsy in the family than in others (3.4 vs. 2.7, p = 0.025). Only 4% of relatives without epilepsy had felt stigma. Scores in relatives were unrelated to genetic attribution.


CONCLUSIONS
In these unusual families, predictors of felt stigma in individuals with epilepsy are similar to those in other studies, and stigma levels are low in relatives without epilepsy. Felt stigma may be increased in people with epilepsy who believe epilepsy in the family has a genetic cause, emphasizing the need for sensitive communication about genetics.
Department of Psychiatry, College of Physicians and Surgeons, Columbia University, New York, New York, U.S.A.
Maya
M
Sabatello
Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, New York, U.S.A.
Jo C
JC
Phelan
G. H. Sergievsky Center, College of Physicians and Surgeons, Columbia University, New York, New York, U.S.A.|Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, U.S.A.
Dale C
DC
Hesdorffer
Department of Sociology, Brandeis University, Waltham, Massachusetts, U.S.A.
Sara
S
Shostak
Department of Biostatistics, Mailman School of Public Health, Columbia University, New York, New York, U.S.A.
Jeff
J
Goldsmith
G. H. Sergievsky Center, College of Physicians and Surgeons, Columbia University, New York, New York, U.S.A.
Shawn T
ST
Sorge
G. H. Sergievsky Center, College of Physicians and Surgeons, Columbia University, New York, New York, U.S.A.|Department of Neurology, College of Physicians and Surgeons, Columbia University, New York, New York, U.S.A.
Melodie R
MR
Winawer
Department of Pediatrics, College of Physicians and Surgeons, Columbia University, New York, New York, U.S.A.|Department of Medicine, College of Physicians and Surgeons, Columbia University, New York, New York, U.S.A.
Wendy K
WK
Chung
G. H. Sergievsky Center, College of Physicians and Surgeons, Columbia University, New York, New York, U.S.A.|Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, U.S.A.|Department of Neurology, College of Physicians and Surgeons, Columbia University, New York, New York, U.S.A.|Division of Epidemiology, New York State Psychiatric Institute, New York, New York, U.S.A.
Ruth
R
Ottman
D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D000368:Aged; D016002:Discriminant Analysis; D004827:Epilepsy / Q000235:genetics* / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011237:Predictive Value of Tests; D012737:Sex Factors; D057545:Social Stigma; D011795:Surveys and Questionnaires; D055815:Young Adult
Epidemiology; Genetic attribution; Genetics; Stigma; Survey