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Keywords:

  • Knowledge;
  • Epilepsy;
  • Patients with epilepsy;
  • Patient information;
  • Quality of life;
  • Cross-cultural

Summary:  Purpose: To study how much people with epilepsy in Europe know and understand about their condition and how this might affect their lives.

Methods: Clinical, demographic, psychosocial details and information assessing knowledge were collected by using self-completion questionnaires mailed to members of epilepsy support groups.

Results: Data were collected from 6,156 people with epilepsy from ten European countries. There were significant between-country differences in all variables considered. Overall levels of knowledge were acceptable when measured by the epilepsy knowledge questionnaire (EKQ, medical items). However, there were some gaps in knowledge, particularly in issues relating to medication and cause of epilepsy.

Conclusions: This is the largest study of its kind to date. Results clearly highlighted that levels of knowledge differed significantly between countries. Overall, people with epilepsy are reasonably well informed about epilepsy, although some gaps in knowledge were evident.