Abstracts

Rationale: Epilepsy is a common neurological disorder with no racial predominance. However, little is known whether understanding and perceptions of epilepsy differ among various cultures. To the best of our knowledge only one study in the US identified a high rate of misperceptions in the Spanish population (Sirven, J. Epilepsy & Behavior, 2005). The purpose of our study was to determine and compare the awareness of epilepsy in an Indian and a Caucasian community regarding symptoms, causes, treatment, psychosocial implications, and stigma.Methods: A 10-item multiple choice survey (IRB approved) was distributed to 170 households in an apartment complex, and a similar one to members of a Gujarati (Indian community) seniors club. The questions in the later group were written in Gujarati and clarified by an interpreter. Respondents were asked to choose which one statement out of five best described their opinion. Demographic items included age and ethnic background. Knowledge based items included symptoms of epilepsy, prevalence, treatment, and first aid. Social issues were addressed by questions pertaining to employment, driving and stigma. Descriptive statistics were applied and comparison between groups was done.Results: Demographics: Forty five residents (81% of which were Caucasians) of the apartment complex (24%), and 87 members of the Indian community (89%) responded. Knowledge: Forty-four percent of Indians felt that shaking of the body constitutes a seizure as opposed to 75% of Caucasians who listed any of shaking, confusion, memory lapses and sensory symptoms to be part of a seizure (p<0.001). The majority of respondents in both groups listed trauma/prior accident as the cause of epilepsy. Regarding treatment, 42% of the Indian community chose medication, as opposed to 76% of Caucasians. Behavior and psychiatric therapy was selected by 36% of Indians and only 7% of Caucasians. Surgery as a treatment option was chosen by less than 15% in both groups. When providing immediate assistance to a seizing patient, 26% of Indians indicated they would lay the person on the floor, compared with 54% of Caucasians (p=0.003). Social issues: In both groups, the major concern for an individual upon learning that a friend had seizures was their lack of knowledge as to how better help them [90% Caucasian, 55% Indians, (p<0.001)]. A statistically significant difference was also identified concerning a patient’s working ability. Fifty six percent of Caucasians believe that epilepsy patients can work full time with limitations, as opposed to 35% of the Indian group (p=0.025). Conclusions: Our survey showed that knowledge about epilepsy significantly differs between the Indian and Caucasian communities in particular with respect to seizure manifestations, first aid and treatment. Physicians need to be aware of these differences when caring for their increasingly diverse patient populations. Our findings demonstrate the need to better educate epilepsy patients by tailoring education efforts to their ethnic background.