Levels of epilepsy stigma in an incident population and associated factors

Abstract

We assess the psychometric properties of a revised stigma scale and report the levels of stigma in an incident population and the clinical, demographic, and quality-of-life factors associated with doing so. A total of 1566 people with new-onset epilepsy completed the revised stigma scale, as part of the Standard and New Antiepileptic Drugs (SANAD) trial. The revised scale had good internal consistency (0.85) and good concurrent validity. It also reduced the floor and ceiling effects associated with the original scale. Fifty-four percent of people reported feeling stigmatized (47.3% mild–moderate stigma, 6.1% high stigma). Reduced sense of mastery, younger age (< 50), side effects of medication, poorer cognitive function, feeling socially restricted, poor global quality of life, and more than four seizures at baseline were significant factors determining scores on this revised scale. These should be the focus of interventions to try and reduce feelings of stigma in those with new-onset epilepsy.