We aim to quantify the degree of epilepsy stigma perceived by people living with epilepsy (PLWE) in the Republic of Guinea (2019 gross national income per capita, 930 USD) and analyze the demographic, social, and clinical factors associated with epilepsy stigma in this setting.
A prospective convenience cohort of PLWE was recruited at the Ignace Deen Hospital in Conakry and evaluated by U.S. and Guinean neurology-trained physicians. A survey instrument exploring demographic, social, and clinical variables was designed and administered. The primary outcome measure was the Stigma Scale of Epilepsy (SSE), a 24-item scale with scores ranging from 0 (least stigma)-100 (most). Regression models were fit to assess associations between SSE score and pre-selected demographic, social, and clinical variables of interest.
249 PLWE (112 female; mean age 20.0 years; 22 % from rural locales; 14 % of participants >16 years old with no formal schooling; 11 % seizure-free for >=6 months) had an average SSE score of 46.1 (standard deviation = 14.5) points. Children had an average SSE score of 45.2, and adults had an average score of 47.0. There were no significant differences between self- and guardian-reported SSE scores (means = 45.8 and 46.5, respectively), p = .86. In univariate analyses, higher stigma scores were associated with more seizures (p = .005), more depressive symptoms (p = .01), and lower household wealth (p = .03). In a multivariable model including sex, educational level, household wealth, generalized tonic-clonic seizures, seizure frequency, and seizure-related burns, only higher seizure frequency (β = -2.34, p = .03) and lower household wealth (β = 4.05, p = .03) were significantly associated with higher SSE scores.
In this Guinean cohort of people living with poorly-controlled epilepsy, there was a moderate degree of perceived stigma on average. Stigma was associated with higher seizure frequency and lower household wealth-both potentially modifiable factors.

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