Purpose: This study was undertaken to determine what patients with epilepsy need to know about their condition, and to discern what differences exist between patients' perceptions of this need and the medical profession's perception of what patients should know.
Methods: Seventy-five consecutive patients with epilepsy and 56 medical personnel (residents and nurses) who were working in either Neurology or Neurosurgery Units were studied using a structured questionnaire consisting of 3 subsets with a total of 27 questions.
Results: Using a Likert scale, epilepsy patients gave high priority to their need for more information about "how epilepsy is diagnosed," "the structure of the brain" (p < 0.05, p < 0.01, respectively), and "the diet that might prevent the attack" (p < 0.05) than did medical personnel. Our study also revealed that men were more concerned with questions regarding smoking and drinking than were women (p < 0.05, respectively), whereas married patients gave higher scores in the category of employment (p < 0.01) and contraception/pregnancy (p < 0.05) than did unmarried patients. The patients with one or more seizures per month rated higher scores on questions concerning the first aid at the time of attack and dosage of antiepileptic drugs (AEDs; p < 0.05, respectively) than did the patients with fewer than one seizure per month. The patients taking poly-AED treatment gave higher scores on six items related to AED therapy than did those receiving monotherapy. No significant differences were found with regard to the length of time patients had the condition, nor to educational level or current employment status.
Conclusions: An educational program for epilepsy patients should be developed on the basis of understanding that there are differences in perspectives among patients with different sociocultural contexts as well as between patients and medical personnel.