What do patients prefer their functional seizures to be called, and what are their experiences of diagnosis? – A mixed methods investigation

• Published in: Epilepsy & behavior Vol. 117; p. 107817
• Main Authors: Loewenberger, Alana, Davies, Karuna, Agrawal, Niruj, Poole, Norman, Cope, Sarah R.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.04.2021
• Subjects: Conversion Disorder - diagnosis; Dissociative Disorders; Dissociative seizures; Functional nonepileptic attacks; Functional seizures; Humans; Neuropsychiatry; Nonepileptic attack disorder; Psychogenic nonepileptic seizures; Psychophysiologic Disorders; Seizures - diagnosis; Surveys and Questionnaires; Terminology; Psychogenic nonepileptic seizures; Dissociative seizures; Functional seizures; Nonepileptic attack disorder; Terminology; Functional nonepileptic attacks
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2021.107817

•Terms to describe functional seizures were ranked by 39 patients with functional seizures.•Thirteen patients completed semi-structured interviews on their experience of being diagnosed.•NEAD, Functional seizures, FNEA and Dissociative seizures were the most preferred terms.•NEAD was the least offensive term, with Functional seizures and FNEA following closely.•Thematic analysis indicated that a term needs to facilitate shared acceptance and understanding.•Several terms provided this, and there was not a shared agreement among patients.•Following our previous study, we propose that the term Functional Seizures or FNEA is adopted. This study explored the preferred terms for functional seizures, and the experience of being diagnosed, from the patient’s perspective. 39 patients in a neuropsychiatry service diagnosed with functional seizures completed an online survey to investigate preferences for, and offensiveness of, 11 common diagnostic terms used to describe functional seizures. Of these 39 patients, 13 consented to take part in a semistructured interview exploring the experience of receiving a diagnosis. Nonepileptic attack disorder (NEAD), functional seizures, functional nonepileptic attacks (FNEA), and dissociative seizures were ranked the highest preferred terms and did not significantly differ from one another. NEAD was the least offensive term, with functional seizures and FNEA following closely. Significant overlap in confidence intervals was found between the offensiveness of all terms. Terms that indicated a psychological origin were the least preferred and viewed as most offensive. Thematic analysis identified three main themes on the experience of being diagnosed: ‘being heard and having a shared understanding’, ‘feeling alone’, and ‘sense of hope’. Patients favored diagnostic terms that facilitated and alleviated these themes on a personal basis; however, preferences differed across individuals. Our findings suggest that a range of terms have a similar level of preference and offense rating, with NEAD, functional seizures, and FNEA being the most favorable. Qualitative analysis indicates that a term and its accompanying explanation should facilitate shared acceptance and understanding, and several terms provide this. In combination with our previous study on healthy participants, we propose that one of the two terms researched are adopted by patients, health professionals, and the public: Functional nonepileptic attacks or Functional seizures.