Presenting to emergency departments with functional seizures: Motivators for attendance and experiences of care

Abstract

Objective: Patients with functional seizures frequently present to emergency departments, and often have unsatisfactory/negative experiences there. It has been proposed that many of these visits are preventable, but the patient perspectives have not been well-studied.

Methods: Past (≥1 appointment, discharged and no longer engaged with the clinic) and present (≥1 appointment, still engaged with the clinic) patients of the Alfred Hospital Functional Seizures clinic without comorbid epilepsy with an established diagnosis of functional seizure were invited to complete a survey on reasons for attending an emergency department and experiences of emergency care. Themes were identified using descriptive content analysis.

Results: There were 229 eligible patients, and 94 participants returned the survey (41 % response rate), of whom 58 (62 %) had presented to an emergency department at least once with functional seizures since their diagnosis. The most frequent reason for seeking emergency care was a change in seizure symptomatology (47 %), followed by medical investigation (16 %). Most (62 %) did not make the decision to go to the emergency department themselves, with family members the most reported decision-makers. Almost a quarter (24 %) felt that presenting to emergency was unavoidable. Themes of validation, medical attention, and knowledge/expertise were identified by individuals as useful when attending emergency departments; and a lack of these features featured heavily in responses regarding concerns about (and negative experiences of) seeking treatment for functional seizures in emergency departments.

Conclusions: The minority of patients make the decision to seek emergency department care themselves with a functional seizure. Further education of ED professionals, including guidelines for screening and quality of care measures, could help to address the needs of people who present to ED with functional seizures.

Keywords: Emergency department; Functional neurological disorder; Psychogenic non-epileptic seizures.