Skip to main content
OpenTrials
Completed

NCT Number: NCT01374204

Epilepsy-Associated Stigma

Few data about epilepsy-associated stigma in France are available. The only study we have found showed that in France 66% of people with epilepsy felt stigmatized by their condition and are often single, compared with the other European patients interviewed (Baker et al., 2000). The purpose of this study is to assess the association between type of epilepsy (drug resistant-epilepsy and stabilized epilepsy) and perceived stigma (using the Stigma Scale) in patients recruited in the Limousin region .

Completed

Looking for future studies?

Notify Me

Key information

Conditions

Epilepsy Behavior Brain Diseases Central Nervous System Diseases Nervous System Diseases Social Behavior Social Stigma

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Service de neurologie

Limoges, 87042, France

About this study

Epilepsy-associated stigma leads important problems in terms of public health because it can provoke significant cognitive repercussions, impairment of quality of life and it causes physical injuries and serious disabilities. These social consequences often cause more suffering for patients than seizures themselves.

This heavy medical and social burden is associated with significant economic cost in terms of care and disability. It is also noted that mortality rate is 2 to 10 times higher than the general population.

It is therefore urgent to consider both medical and social dimension of consequences of epilepsy especially in patients with uncontrolled seizures.

It is also essential to detect a potential psychiatric disorder associated with epilepsy, especially depression and anxiety which are the most prevalent psychiatric comorbidities. These disorders are often under-diagnosed that can frequently leads to an inappropriate care.

The purpose of this study is to assess the association between type of epilepsy (drug resistant-epilepsy and stabilized epilepsy) and perceived stigma (using the Stigma Scale) in patients recruited in the Limousin region .

The primary outcome will be the score of perceived stigma obtained from the Stigma Scale.

This scale estimates a score of perceived stigma for each individual and allows classifying individuals in 3 categories.

Thus, individuals who obtain a total score of 0 will be those who do not feel stigmatized. Those whose scores will be over or equal to 1will be those who feel stigmatized. Finally, respondents whose the score is equal to 3 will be considered as having a strong perception of stigma.

A positive response is characterized by threshold ≥ 1.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • 18 years and above
  • diagnosed by a neurologist as suffering from drug-resistant epilepsy (all types of seizures) outpatient in Neurology service of the investigation centres
  • inhabitant in the Limousin region
  • having signed the informed consent
  • affiliated or profiting of a social security system

Exclusion criteria

  • patients that are deprived of their freedom
  • patients with disabilities
  • patients suffering from a chronic or an acute delusional disorder
  • patients suffering from others handicaps

Treatment and study plan

Primary outcomes

  1. score of perceived stigma

    Time frame: Day one

    This scale estimates a score of perceived stigma for each individual and allows classifying individuals in 3 categories.

    Thus, individuals who obtain a total score of 0 will be those who do not feel stigmatized. Those whose scores will be over or equal to 1will be those who feel stigmatized. Finally, respondents whose the score is equal to 3 will be considered as having a strong perception of stigma.

    A positive response is characterized by threshold ≥ 1.

Secondary outcomes

  1. Evaluation of the illness experience will be performed by the first section of the EMIC.

  2. Evaluation of the representations of epilepsy (perceived causes) will be done by the second section of the EMIC

Sponsors and collaborators

Lead sponsor

University Hospital, Limoges

Other

Registry information

Official study title

EPILEPSY-ASSOCIATED STIGMA AND ILLNESS EXPERIENCE IN PEOPLE WITH EPILEPSY

Acronym: EPISTIGMA

Important dates

Study start
2011
Primary completion
2018
Study completion
2019
First posted
Jun 15, 2011
Registry last updated
Jul 5, 2019

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Related clinical trials

Published trials that share one or more normalized conditions with this study.