Attitudes towards a diagnosis of functional non-epileptic attacks
Research type
Research Study
Full title
Preferences surrounding terms used to describe seizures not due to epileptic activity
IRAS ID
240777
Contact name
Alana Loewenberger
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2018/06/147, UCL Data Protection
Duration of Study in the UK
0 years, 7 months, 1 days
Research summary
Functional neurological disorder (FND) is one of the most common diagnoses made in Neurology clinics (Stone et al., 2010). Symptoms appear neurological in nature, such as jerking movements, vision loss, paralysis, dizziness or fits, but are not due to any known organic impairment. Patients’ symptoms are real, so experiencing FND can result in similar levels of disability but more distress, when compared with patients who have an organic disease. Functional non-epileptic attacks (FNEA) are a common presentation of FND, whereby they look like epileptic seizures, but are not associated with epileptic activity in the brain. A wide range of different diagnostic labels are used to describe FNEA, which can be confusing for patients and their families; and can affect the healthcare they receive.
Aim
This study aims to investigate preferences for different diagnostic terms used. Offensiveness of the terms presented will also be considered. The study also aims to gather information regarding patients' experiences with health professionals in different parts of the health service regarding their diagnosis, e.g. GP, neurologist; and whether the term used affected their experience(s).Design
Participants will complete an online survey in which they rank diagnostic terms in order of preference, and then respond to potential negative connotations of these terms. Friedmans, Wilcoxon Signed Ranks and Mann Whitney U tests will be used to determine significant differences in ranking of preferences, and whether this differs between groups (Patient vs Family member). Offence scores are calculated from the number of participants who select ‘yes’ to at least one of the negative connotations for each diagnosis. Pearson’s Chi Square test will be used to compare offence scores by participant group. Numbers needed to offend are calculated from these offence scores.
Survey participants who are patients will be asked whether they agree to be contacted to be interviewed. Interview data will be analysed thematically.REC name
South Central - Hampshire A Research Ethics Committee
REC reference
18/SC/0463
Date of REC Opinion
7 Sep 2018
REC opinion
Further Information Favourable Opinion