Felt Stigma in People Living With Epilepsy Varies Depending on Assessment Tool

The felt stigma proportion among people living with epilepsy varied depending on the measurement tool utilized, according to study findings published in the journal Seizure.

Researchers systematically reviewed studies that provided a felt stigma ratio assessment in people living with epilepsy, using Jacoby’s Stigma Scale (JSS) and its revised edition (JSS-R), and integrated the findings to compare them across continents.

A total of 63 datasets from 47 studies were conducted across 5 continents, 51 utilized JSS, while 12 used JSS-R to investigate felt stigma among people living with epilepsy.

Out of a total of 29,924 people living with epilepsy, 14,323 individuals experienced felt stigma, resulting in an overall felt stigma proportion of 48.4% (95% CI, 0.443-0.524).

Upon combining the 51 JSS datasets, a total of 25,794 people living with epilepsy were identified, with 11,855 of them reporting felt stigma. The proportion of felt stigma in people living with epilepsy was determined to be 0.449 (95% CI, 0.407-0.492) using JSS.

The 12 combined datasets from JSS-R revealed a total of 4130 people living with epilepsy, of which 2468 reported experiencing focal seizures. By utilizing JSS-R, it was determined that the proportion of felt stigma in people living with epilepsy was 0.621 (95% CI, 0.574-0.667).

The intercontinental analysis revealed that in Africa (n=10), the proportion of felt stigma in people living with epilepsy was 0.512 (95% CI, 0.392-0.630), while in Europe (n=29) it was 0.472 (95% CI, 0.430-0.515). In Asia (n=10), the felt stigma proportion stood at 0.354 (95% CI, 0.262-0.460), and in the Middle East (n=2) it was 0.288 (95% CI, 0.069-0.686).

The results of the meta-regression analysis, which examined 51 datasets using the JSS method to assess the decline in functional seizures over time, indicate a decreasing trend. The analysis revealed a negative estimate of -0.01 for the impact of publication year on the proportion of functional seizures. However, statistical testing demonstrated that this predictor did not have a significant influence on the effect size (Q value=0.484, P =.487).

Overall, when using JSS, the felt stigma proportion was 44.9%, whereas with JSS-R, it increased to 62.1%.

The researchers concluded that “Even though the FS [felt stigma] proportions were integrated differently, no substantial differences were observed between continents [among people living with epilepsy].”

Study limitations included the variability resulting from the diverse range of primary studies and the recruitment methods for the target population of individuals living with epilepsy were not consistent.