Stigma and its association with health-related quality of life in adults with epilepsy

Abstract

Objective: To explore the presence of felt and enacted stigma in people with epilepsy (PWE), members of a self-governing epilepsy organization and to evaluate the influence of both types of stigma on health-related quality of life (HRQoL) in PWE.

Methods: Participants were 55 PWE (age range: 18-53 years), members of a non-governmental organization (further "NGO"). The sociodemographic and epilepsy-related variables were collected through structured interviews designed for the purpose of the study. Felt stigma was assessed with the Epilepsy Stigma Scale (ESS) and enacted stigma with the Questionnaire for episodes of discrimination against PWE. Quality of Life in Epilepsy Inventory (QOLIE-31) (Serbian version) was used for the evaluation of HRQoL.

Results: The mean ESS score was 33.93 ± 14.50. Felt stigma was significantly associated with the male gender and the number of antiepileptic drugs (AEDs). Participants' mean score on the Questionnaire for episodes of discrimination was 2.80 ± 2.78. Enacted stigma was significantly correlated with male gender and number of AEDs, as well as with older age/longer duration of the disorder. Felt stigma scores were positively correlated with enacted stigma scores (p < 0.001), but only felt stigma scores were negatively related to QOLIE-31 overall score (p = 0.01). The combination of AEDs, seizure frequency, and felt stigma best explained the HRQoL in PWE (p < 0.001).

Conclusion: Felt and enacted stigma are moderately related, but only felt stigma appears to be a significant predictor of the deteriorating HRQoL in this sample. Interventions targeting felt stigma should be considered a part of comprehensive epilepsy care as well as educating the wider community about epilepsy.

Keywords: Epilepsy; Health-related quality of life; Stigma.