Evaluation of self-stigma in patients with epilepsy: Validation of the self-stigma scale to Spanish (ESSS-S)

Objective

The Epilepsy Self-Stigma Scale (ESSS) has been developed in Japan for patients with epilepsy (PWE). We aimed to validate the scale in Spanish and examine its validity and reliability.

Methods

The transcultural adaptation of the ESSS was conducted using translation and back-translation, along with pilot testing and an expert panel review. An online questionnaire was used to assess construct validity, criterion validity, and internal consistency.

Results

A total of 260 out of 628 participants completed the questionnaires. We found a two-factor structure that explained 61.3% of the total variance: factor 1 “self-perceived discrimination” with a Cronbach's alpha of 0.80, and factor 2 “social isolation” with a Cronbach's alpha of 0.75. The reliability of overall ESSS-S 8-item scores was high (Cronbach's alpha = 0.74). Convergent validity was tested and demonstrated a significant correlation. P.

Self-perceived discrimination scores were associated with higher anxiety and depression scores (r = 0.53/0.54; p < 0.001), lower self-esteem (−0.53; p < 0.001), and lower quality of life (r = −0.66; p < 0.001). Social isolation scores were associated with higher anxiety and depression scores (r = 0.41/0.33; p < 0.001), lower self-esteem (−0.34; p < 0.001), and lower quality of life (r = −0.35; p < 0.001). Temporal reliability was also tested, showing a test–retest ICC of 0.87. The mean self-stigma score in the Spanish population was 17.68 ± 5.45 out of 32 points. Invariance across gender and age groups indicated that there are no systematic response biases by gender or age, so stratified scores could be related to other constructs.

Significance

The Spanish version of ESSS (ESSS-S) is a valid and reliable tool for the assessment of self-stigma in PWE among Spanish speakers.

Plain Language Summary

This study aimed to validate the Epilepsy Self-Stigma Scale (ESSS) for Spanish speakers (ESSS-S). We conducted transcultural adaptation of the scale. ESSS-S showed high reliability and strong validity, correlating with higher anxiety and depression, lower self-esteem, and quality of life. ESSS-S is a reliable and valid tool for assessing self-stigma in Spanish-speaking people with epilepsy.