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Seizure. 2018 Feb;55:93-99. doi: 10.1016/j.seizure.2018.01.001. Epub 2018 Jan 12.

Health related quality of life of people with non-epileptic seizures: The role of socio-demographic characteristics and stigma.

Author information

1
Department of Community Medicine, Faculty of Health Sciences, University of Tromsø - The Arctic University of Norway, N-9037 Tromsø, Norway. Electronic address: catherine.robson@uit.no.
2
The Northeast Regional Epilepsy Group, 820 Second Avenue, Suite 6C, New York, NY 10017, United States. Electronic address: lmyers@epilepsygroup.com.
3
Department of Psychology, Stellenbosch University, Stellenbosch 7600, South Africa. Electronic address: chrismapretorius@sun.ac.za.
4
Department of Community Medicine, Faculty of Health Sciences, University of Tromsø - The Arctic University of Norway, N-9037 Tromsø, Norway. Electronic address: olaug.lian@uit.no.
5
Academic Neurology Unit, University of Sheffield, Royal Hallamshire Hospital, Glossop Road, Sheffield S10 2JF, United Kingdom. Electronic address: m.reuber@sheffield.ac.uk.

Abstract

PURPOSE:

People with non-epileptic seizures (NES) consistently report poorer Health-Related Quality of Life (HRQoL) than people with epilepsy. Yet, unlike in epilepsy, knowledge of how social factors influence the HRQoL of adults with NES is limited. To add to the evidence base, this study explores the relationship between HRQoL and perceived stigma among adults with NES, and the role of socio-demographic characteristics.

METHODS:

Data was gathered from a survey of 115 people living with the condition, recruited from online support groups. Participants provided socio-demographic and health-related data and completed a series of questions investigating their HRQoL (QOLIE-31) and stigma perceptions (10-item Epilepsy Stigma Scale).

RESULTS:

Participants were found to experience high levels of perceived stigma (median 5.2, mean 4.9). A significant and moderate inverse correlation was observed between HRQoL and stigma (rs - 0.474, p = < 0.001); suggesting higher perceptions of stigma contribute to poorer HRQoL among adults with NES. Stigma perceptions were found to be most strongly associated with the seizure worry (rs = - 0.479), emotional wellbeing (rs = - 0.421), and social functioning (rs = 0.407) HRQoL domains. Participants who reported being in employment or education were found to have significantly better HRQoL than those who were not (p = < 0.001).

CONCLUSION:

More (qualitative and quantitative) research is justified to understand how - and why - those with the condition experience stigmatisation, and the factors that impede and help facilitate the participation of people with NES in education and employment.

KEYWORDS:

Non-epileptic attack disorder; Psychogenic non-epileptic seizures; Quality of life; Socio-demographic factors; Stigma

PMID:
29414141
PMCID:
PMC5884310
DOI:
10.1016/j.seizure.2018.01.001
[Indexed for MEDLINE]
Free PMC Article

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