Non-epileptic seizures: patients’ understanding and reaction to the diagnosis and impact on outcome

Abstract

Rationale: The study aim was to assess patients’ understanding of and reaction to a diagnosis of non-epileptic attack disorder and to explore whether these factors contribute to outcome. Method: Eighty-four patients diagnosed with non-epileptic attack disorder participated in the study. Participants answered questions about their seizures and understanding and reaction to the diagnosis. Data were collected by semi-structured telephone interview. Questionnaires were sent to the patients’ general practitioners (GPs) to gather information regarding the patient’s seizure status, prescription of anti-epileptic drugs and opinion regarding the diagnosis. Results: At the time of follow-up, a third of participants reported being seizure free. A total of 63% did not have a good understanding of the diagnosis, most were unclear about the precipitating factors and the most common reaction to the diagnosis was confusion. Many reported a negative impact of NES on everyday life. Sixty-five percent reported receiving psychological follow-up but the number of sessions attended was few (median 2). There was evidence that the reaction to the diagnosis contributed to the outcome in particular an angry outcome was associated with a poor prognosis. Ten GPs did not agree with the diagnosis. Conclusion: Patients understanding and reactions to a diagnosis of non-epileptic attacks are important factors that should contribute to the development of more tailored treatment approaches.