An Assessment of Epilepsy Patients' Knowledge of Their Disorder

Purpose: Patient education is an effective component of comprehensive care. Studies assessing patient's knowledge of their epilepsy are scarce. We report the first objective study evaluating knowledge of epilepsy patients referred to an American tertiary care center.

Methods: Two hundred twenty epilepsy patients referred to an epilepsy center completed a knowledge questionnaire. The questionnaire included topics related to safety, compliance, and legal issues of driving and employment. Questionnaire scores were correlated with demographics, number of years with epilepsy, and educational background.

Results: Of 220 patients, 175 were included in study analysis. Thirteen percent (n = 28) were excluded because of the diagnosis of nonepileptic seizures, and 8% (n = 17) were excluded because of having a diagnosis other than epilepsy. The average age and number of years with epilepsy was 34.7 +/- 13 and 14. 4 +/- 13.1, respectively. Neither age (r = 0.20, p </=0.01), number of years with epilepsy (r = 0.09, p = 0.2), nor years of education (r = 0.34, p </=0.01) correlated with questionnaire scores. Thirty percent believed that epilepsy is a mental disorder or contagious. Forty-one percent believed it is appropriate to place an object in a patient's mouth during a seizure to prevent injury. Two of the lowest scores, 13.6% and 47.5%, pertained to the legal issues of driving and employment, respectively.

Conclusions: Patients with epilepsy are not knowledgeable about their disorder. This is true regardless of age, educational background, or number of years with epilepsy. There is a need for educational intervention in this population, particularly related to injury prevention and the legalities of driving and employment.