Factors associated with increased felt stigma among individuals with epilepsy

• Certain traits characterize PWE who have higher levels of felt stigma.
• Single individuals are more likely to have increased felt stigma.
• Higher levels of felt stigma are associated with poor quality of life.
• Increased felt stigma is seen among individuals with poorer health literacy.
• PWE with higher stigma utilize behavioral disengagement as a coping technique.

PurposeThe aim of the study is to determine whether certain demographic, clinical, and psychosocial traits are associated with higher levels of felt stigma among persons with epilepsy (PWE) patients followed at a level 4 epilepsy center.MethodsWe performed a direct survey of 182 consenting patients that included the Epilepsy Stigma Scale.ResultsOn univariate analysis, higher levels of perceived stigma were associated with age, marital status, race, driving, work status, seizure etiology, Quality of Life in Epilepsy-10 (QOLIE-10) scores, and health literacy. Among coping reactions, the use of denial, behavioral disengagement and venting were also associated with higher degrees of felt stigma.Using multiple linear regression, being single, poorer QOLIE-10 scores, difficulties understanding written information, and the use of behavioral disengagement were independently associated with poorer scores on the Epilepsy Stigma Scale.ConclusionOur study paints a compelling profile of a PWE who has greater perceived stigma. Programs that increase the level of social support, improve health literacy, and enhance quality of life may also help decrease the amount of felt stigma among PWE.