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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Flash: Genetic Attribution and Felt Stigma in People with Epilepsy


ELSIcon2022 • Flash • May 27, 2022

Ruth Ottman, John B. Wetmore

Among people with epilepsy, felt stigma remains common and significantly impacts quality of life. In our previous study of families containing multiple individuals with epilepsy, felt stigma was increased in people who believed their epilepsy had a genetic cause. Here, we reexamined this association among participants unselected for family history in the Epilepsy and Genetics Lived Experience (EAGLE) study.
553 adults with epilepsy of unknown cause completed a self-administered survey in English or Spanish (64% women, average age 40 years, 66% white non-Hispanic, 6% Black non-Hispanic, 19% Hispanic, 9% other).
We developed a genetic attribution (GA) scale based on average responses to four survey items relating to participants’ perception that genetics was a cause of their epilepsy (Cronbach’s alpha=0.90, range 0-10, mean 4.6).
We assessed felt stigma using the 10-item Epilepsy Stigma Scale (ESS). Factor analysis indicated the scale contained two subscales, reflecting participants’ views of the way others see them (ESS-Other, 7 items, alpha=0.86, range 1-7, mean 3.0), or their views of themselves (ESS-Self, 2 items, alpha=0.87, range 1-7, mean 3.1).  
ESS-Other scale values increased significantly with increasing GA, with a 5% increase per unit increase in GA (RR=1.05, p=0.03). ESS-Self scale values were not associated with GA. Adjustment for potential confounders did not alter these results.
These results confirm our previous findings in a more representative sample of people with epilepsy. They suggest that felt stigma may be increased in people who believe their epilepsy has a genetic cause, emphasizing the need for sensitive communication about genetics.


Stigma and discrimination
Genetic testing and screening

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