Stigma in 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, according to a study of 181 people with epilepsy and 178 biologic relatives without epilepsy. Researchers found:

• Among people with epilepsy, 22% meet criteria for “felt stigma,” as evidenced by an Epilepsy Stigma Score (ESS) >4.

• Scores increased among individuals who were: aged ≥ 60 years, unemployed, reported epilepsy-related discrimination, or had seizures within the last year or ≥ 100 seizures in their lifetime.

• ESS scores in people with epilepsy were significantly higher among those who perceived genetics as playing a “medium” or “big” role in causing epilepsy.

• Only 4% of relatives without epilepsy had felt stigma.

• Scores in relatives were unrelated to genetic attribution.

Citation: Sabatello M, Phelan JC, Hesdorffer DC, et al. Genetic causal attribution of epilepsy and its implications for felt stigma. [Published online ahead of print August 20, 2015]. Epilepsia. Doi: 10.1011/epi.13113.