Deconstructing stigma in psychogenic nonepileptic seizures: An exploratory study

• Published in: Epilepsy & behavior Vol. 74; pp. 167 - 172
• Main Authors: Rawlings, Gregg H., Brown, Ian, Reuber, Markus
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01-09-2017
• Subjects: Adolescent; Adult; Aged; Anxiety - psychology; Depression - psychology; Dissociative seizures; Epilepsy; Female; Humans; Male; Middle Aged; Nonepileptic attack disorder; Psychogenic nonepileptic seizures; Psychophysiologic Disorders - psychology; Seizures - psychology; Self-Control; Social Stigma; Stigma; Surveys and Questionnaires; United Kingdom; Young Adult; Psychogenic nonepileptic seizures; Dissociative seizures; Nonepileptic attack disorder; Stigma; Epilepsy
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2017.06.014

Psychogenic nonepileptic seizures (PNES) are classified as a mental disorder, the manifestations of which superficially resemble epileptic seizures.
There is a notable lack of in-depth qualitative or quantitative studies investigating the stigma attached to PNES. The current study is an exploratory analysis into the nature of perceived stigma in those with PNES when compared with individuals with epilepsy. Individuals with epilepsy (n=78) and PNES (n=47) were recruited from a United Kingdom hospital or membership-led organizations for individuals living with seizures. Participants were asked to complete a series of questionnaires investigating health-related quality-of-life components (NEWQOL-6D), anxiety (GAD-7), depression (NDDI-E), seizure frequency and severity (LSSS-3), and illness perception (B-IPQ). Perceived stigma was measured using one question taken from the NEWQOL-6D. Individuals with PNES reported a greater level of perceived stigma than those with epilepsy (p=0.04). Our results indicate that the risk of experiencing perceived stigma in PNES was 42% higher than the risk in epilepsy. In epilepsy, but not PNES, perceived stigma was significantly associated with seizure frequency, anxiety, depression, and many of the sequelae of the condition. In both conditions, self-control was associated with stigma (rho≥0.34, p≤0.01). This study was exploratory, and so definitive conclusions cannot be made; however, our findings suggest that the majority (87.2%) of individuals with PNES reported experiencing some degree of perceived stigma, the risk of which is greater than that in epilepsy. Further research is needed into the prevalence, nature, and consequences of stigma in PNES.
•There is a notable lack of understanding into stigma attached to PNES.•Individuals with epilepsy or PNES report perceived stigma.•Level of perceived stigma was higher in PNES compared with epilepsy.•The odds of perceived stigma was four times greater in PNES than in epilepsy.•In epilepsy but not PNES, stigma was related to depression and seizure frequency.