1. The risk of perceived stigma in psychogenic nonepileptic seizures (PNES) vs. epilepsy
Gregg Rawlings, Ian Brown, Markus Reuber
Academic Neurology Unit, University of Sheffield, UK
Introduction
The probability of perceived stigma was 61.5% in epilepsy and 87.2% in PNES – the probability of perceiving stigma was 1.42 times greater in those with PNES than those with epilepsy.
Stigma is the devaluation of an individual because that person is in possession of an attribute or characteristic that distinguishes him or her from others (1).
The association between stigma and epilepsy has been documented through much of human history and across many cultures.
PNES is a mental disorder manifesting with seizures, both of which are stigmatised behaviours, however, PNES-related stigma has not been the study objective in any published works.
Aims
This was an exploratory study to investigate the prevalence of perceived stigma in individuals with PNES and comparing it with that of perceived stigma in those with epilepsy.
We also investigated the relationship between perceived stigma and a series of demographic, clinical, and psychological factors as a function of epilepsy or PNES (2).
Fig 1. Percentage of individuals with epilepsy or PNES who reported No or some degree (Yes) of perceived stigma
Correlates of perceived stigma:
In epilepsy, but not PNES, stigma was related to seizure frequency, anxiety, depression, worry and memory problems (Table 1).
In both conditions, concentration and personal control were significantly correlated with perceived stigma.
Method
Table 1. Correlation coefficient between perceived stigma and demographic, condition and psychological variables
Participants were recruited from outpatient neurology clinics at the Royal Hallamshire Hospital, Sheffield (UK) and membership-led organisations for individuals who experience seizures.
Patients
Epilepsy N=78, PNES N=47 – all living in a Western culture.
Measures
A question from the NEWQoL-6D was used to investigate perceived stigma. We also measured anxiety (GAD-7), depression (NDDI-E), seizure frequency & severity (LSSS-3)
Results
Conclusion
Sample characteristics
Participants with epilepsy or PNES were closely matched on age, years of education and seizure severity.
Those with PNES reported more seizures in the last four weeks, and scored higher on the subscales of depression and anxiety.
Perceived stigma
Stigma was more commonly perceived by those with PNES than individuals with epilepsy (p=0.04, Fig 1).
Perceived stigma was associated with diagnosis (p=0.002).
The odds for those with epilepsy to report experiencing stigma were 1.6, whereas in PNES, the odds were 6.8. As such, there were fourfold greater odds (4.27) of individuals with PNES perceiving stigma than those with epilepsy.
The risk of perceived stigma in PNES was 42% higher than the risk reported in epilepsy.
The finding that individuals with a functional disorder reported a greater level of stigma when compared to those with a medical condition that has a clear pathophysiological cause is consistent with previous research (3).
The differences in the correlation analyses between epilepsy and PNES suggest important dissimilarities in the nature of stigma perception between the two disorders.
More research is needed into PNES-related sigma. By highlighting the prevalence and possible implications we hope to have attracted attention to this area.
1) Goffman E. Stigma: notes on the management of spoiled identity. Englewood Cliffs: N.J., Prentice-Hall; 1963.
2) Rawlings G, Brown I, & Reuber M. (2017). Deconstructing stigma in psychogenic nonepileptic seizures: An exploratory study. Epilepsy and Behaviour;74:
3) Looper KJ, Kirmayer LJ. (2004). Perceived stigma in functional somatic syndromes and comparable medical conditions. J Psychosom Res;57:373–8.