Psychometric evaluation of the Serbian version of the Stigma Scale of Epilepsy (SSE).

OBJECTIVE: To evaluate the psychometric properties of the Serbian-language version of the Stigma Scale of Epilepsy (SSE). METHODS: The sample consisted of 108 patients with epilepsy (PWE) (60.2 % were female, age range: 19-67 years) and 102 students (86.3 % were female, age range: 18-47 years). The study encompassed two phases: (1) translation of the SSE into Serbian using the back-translation technique, and (2) evaluation of reliability and construct validity of the Serbian-language version of SSE. In addition to the SSE, the PWE filled out a Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), Patient Health Questionnaire-9 (PHQ-9), and Generalized Anxiety Disorder-7 (GAD-7). The socio-demographic and clinical variables were noted for each patient by the semistructured interview. Besides completing the SSE, the students were asked if they knew anyone with epilepsy. The reliability of the questionnaire was tested by assessing the internal consistency of the scale (Cronbach's α), while construct validity was assessed by factor analysis, method of known-groups validation, and correlation analysis. RESULTS: SSE demonstrates a satisfactory level of reliability in both samples, with Cronbach's α of 0.86 in the PWE sample and 0.90 in the student sample. Using exploratory factor analysis, four factors were identified in both samples, corresponding relatively well with the scale domains originally produced, with a few exceptions described. Adverse effects (AEs) of antiseizure medications (ASMs) and driving ability significantly influenced SSE scores, but there were no significant effects of other socio-demographic and clinical variables on epilepsy-related stigma in the PWE sample. In addition, depression severity significantly influenced SSE scores (based on NDDI-E cut-off score), with the SSE showing a positive association with PHQ-9 (r = 0.42, p < .001) and GAD-7 (r = 0.35, p < .001) as well. Regarding the student sample, the effects of personal knowledge of someone with epilepsy on SSE scores were found to be significant. Besides, students (M = 46.28, SD = 16.43) reported higher epilepsy-related stigma than patients (M = 40.66, SD = 17.01), t(208) = 2.43, p < .05, d = 0.34. CONCLUSION: The Serbian version of the SSE has good psychometric properties and represents a useful tool for assessing epilepsy-related stigma in both patients and the general population.

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

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.