Acceptability and effectiveness of a strategy for the communication of the diagnosis of psychogenic nonepileptic seizures

Abstract

SUMMARYPurpose: Communicating the diagnosis of psychogenic nonepileptic seizures (PNES) is a challenging task. This study was carried out to assess the acceptability and effectiveness of a new communication procedure consisting of a patient information leaflet and a communication strategy for neurologists. Methods: In a multicenter prospective study, 50 patients newly diagnosed with PNES were informed about the diagnosis by 10 different neurologists using the communication procedure. Follow-up data were gathered by telephone interview and completion of a questionnaire about symptom attributions (psychological/physical) and illness cognitions (Illness Perception QuestionnaireRevised, IPQ-R). Results: Ninety-four percent of patients found the leaflet easy to understand. Ninety-four percent stated their questions were answered by the doctor; 70% got what they wanted from the consultation; only 4% reported feeling angry during the consultation. Eighty-six percent of patients acknowledged that psychological factors were at least contributing to their seizures. On the IPQ-R, ''emotional'' causes for the seizures were endorsed more commonly than ''nonemotional'' causes (p < 0.001). After 3 months, 14% of patients were seizure-free and 63% reported a >50% reduction in seizure frequency. Discussion: We conclude that our procedure is acceptable and effectively communicates a psychological etiologic model for PNES.

Offering patients choices: A pilot study of interactions in the seizure clinic

“…In the seizure clinic, patient engagement is critical for improved treatment adherence, whether that be to AEDs or psychotherapy. Conversations in which the diagnosis and treatment of NES are discussed are particularly difficult [36][37]. However, as many as 40%…”

Understanding patient perceptions following a psycho-educational intervention for psychogenic non-epileptic seizures

“…Patients were only asked to consider taking part in the study if the neurologist was sufficiently certain of the diagnosis of PNES to recommend psychological treatment (for instance because seizures had been captured by video-EEG, observed by the neurologist or because clinical information available strongly suggested this diagnosis). The diagnosis was communicated using the communication protocol previously reported [1]. Patients were only included in this trial if they were not thought to have any additional epileptic seizures for at least one year prior to the PNES diagnosis.…”

“…PNES are thought to have psychological causes [1]. It has been estimated that around 12-18% of patients newly presenting with seizures may have PNES [2].…”

The diagnostic and prognostic value of induction methods in patients with psychogenic nonepileptic seizures

“…NEPN'si olan hastaların tedavi sürecinin; tanıyı hastaya deklare etme sürecinde başladığı ve bu aşamada kullanılan etkin bir iletişimin hastanın tedavisine büyük katkı sağlayacağı bildirilmiştir. [22] Reuber ve ark.nın [23] çalışmalarında, 164 NEPN hastasının tanı sonrası 1-10 yıllık takiplerinde %70'inde nöbetlerin sürdüğü belirtilmiştir. Son yıllarda yapılan bir çalışmada ise NEPN'si olan 260 hastanın, tanı sonrası 6-12 ay süre ile takip edildiği ve sadece %38'inde nöbetlerin izlenmediği bildirilmiştir.…”