Loewenberger, A;
Davies, K;
Agrawal, N;
Poole, N;
Cope, SR;
(2021)
What do patients prefer their functional seizures to be called, and what are their experiences of diagnosis? - A mixed methods investigation.
Epilepsy & Behavior
, 117
, Article 107817. 10.1016/j.yebeh.2021.107817.
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Abstract
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.
| Type: | Article |
|---|---|
| Title: | What do patients prefer their functional seizures to be called, and what are their experiences of diagnosis? - A mixed methods investigation |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1016/j.yebeh.2021.107817 |
| Publisher version: | https://doi.org/10.1016/j.yebeh.2021.107817 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher's terms and conditions. |
| Keywords: | Functional nonepileptic attacks, Dissociative seizures, Nonepileptic attack disorder, Functional seizures, Terminology, Psychogenic nonepileptic seizures |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10138194 |
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