Abstracts

Rationale: Psychogenic nonepileptic seizures (PNES) are common cause of refractory spells. PNES are seen in 10 to 58% of adult patients with intractable spells. Video-EEG monitoring has allowed PNES to be effectively distinguished from epileptic seizures. Once the diagnosis of PNES is established, neurologists face the challenge of explaining to the patients that they do not have epilepsy, but that their seizures are a manifestation of psychological distress. Patients may not always receive the good news well, leading to poor follow-up outcome. The aim of this study is to evaluate how effectively patients receive and perceive the diagnosis of PNES. Methods: This prospective study was conducted in the Vanderbilt eight-bed epilepsy monitoring unit (EMU). Adult patients with newly confirmed PNES were included. A self-administered questionnaire was given to patients after the attending physician had communicated the diagnosis of PNES and after receiving written consent. The questionnaire consisted of 41 item Likert-style scaled questions developed by the EMU staff. The questionnaire included items asking if the diagnosis of PNES was clearly communicated and how patients perceived this new diagnosis. Results: A total of 65 patients were recruited, 46 females and 19 males. All patients had their typical spells recorded on video-EEG (range 1-12, mean 2.18). Thirty three patients had high school education while 27 patients had college education. Sixty one patients (94%) were satisfied with the diagnosis of PNES. However four patients (6%) were not satisfied with the diagnosis. Eight patients (13%) did not agree that PNES has a psychological cause. Twelve patients (20%) thought that diagnosis will not change the outcome. Seventeen patients (28%) thought that the EMU doctors had no clue of the cause of PNES. Thirty three patients (51%) thought that people perceive their spells as fake. Twenty two patients (34%) felt that a diagnosis of nonepileptic spells means being crazy. Nineteen patients (30%) thought that there was no hope for cure of their spells. Conclusions: Majority of patients (51%) with PNES in our sample did not perceive the diagnosis of PNES correctly. We speculate that this may have bearing on a poor outcome. Significant numbers of patients with PNES also feel that there is no hope for cure of their spells. Proper and thorough education about PNES and preferably earlier diagnosis may prevent this miscommunication and result in better outcomes. A comprehensive approach including psychological counseling, psychiatrist input and effective follow-up may be helpful.