Abstracts

Rationale: Previous studies have demonstrated a correlation between a number of clinical variables, most consistently seizure frequency and depressive symptoms, and quality of life in epilepsy (QOLIE). Many other studies have documented the perception of epilepsy stigma among people with epilepsy (PWE) around the world. We sought to determine if there is a correlation between epilepsy stigma or other clinical and demographic variables, and QOLIE in an ethnically diverse, economically-disadvantaged, urban population of PWE. Methods: Consecutive patients 14 years or older attending sub-specialty epilepsy clinics at an academic center in Brooklyn, NY answered a structured anonymous questionnaire and the QOLIE-31. The questionnaire had five sections: 1) demographic and clinical data; 2) beliefs about causes of epilepsy; 3) use of alternative epilepsy treatments, i.e. anything other than what was recommended or prescribed by their treating physician; 4) beliefs about the dangerousness and risks of brain surgery, and 5) perception of epilepsy stigma (five questions). Here we report results regarding the final section. Results: The 100 respondents, (65 women, mean age 37, range 14-72) were born in 18 countries on 5 continents. Most associated their cultural beliefs and values with North America (43%), the Caribbean (37%), and Latin America (8%). 51 subjects had an annual household income < $10,000 and most of these reported no income other than public assistance. The mean (S.D.) number of seizures in the previous 4 weeks was 1.8 (3.8) and the median was 1. Patients were taking a mean (S.D.) of 1.7 (0.9) anti-epileptic drugs. Seventy subjects (70%) endorsed at least one of the five stigma-related questions. The number of stigma questions endorsed strongly correlated with “Overall quality of life” (p = .002) and the “worry” subscale (p = .006), as shown in the table. There was no correlation between educational level, economic status, or cultural identity with overall quality of life. Conclusions: : In this culturally diverse, economically disadvantaged population of PWE, perceived epilepsy stigma correlated strongly with QOLIE, while clinical variables such as seizure frequency and duration of epilepsy did not. This suggests that an educational intervention designed to reduce epilepsy stigma could have a clinically meaningful impact on quality of life in PWE. (Supported by NINDS K23NS46347 to ACG)