Epilepsy-related stigma and cost in two onchocerciasis-endemic areas in South Sudan: A pilot descriptive study

Abstract

Introduction: Epilepsy is a major public health concern in sub-Saharan Africa, particularly in resource-limited rural villages where persons with epilepsy (PWE) are often confronted with a wide treatment gap, frequent stigma and high cost of epilepsy care. We investigated stigma and economic cost related to epilepsy in the states of Maridi and Amadi in South Sudan, two onchocerciasis endemic areas with high epilepsy prevalence. Methods: Between November 2019 and February 2020, community-based surveys were conducted in eight villages of Maridi and Amadi States. Consenting PWE were identified via a door-to-door approach, and perceived stigma was assessed using the validated Kilifi stigma scale. Additional data about household income, as well as epilepsy-related direct and indirect costs were collected. Results: 239 PWE were recruited (95 from Maridi, 144 from Amadi). Stigma scores were higher in Maridi compared to Amadi (mean scores: 13.9 vs 6.5, p < 0.001). Mean weighted epilepsy costs per month in Maridi (38.4 USD) were double those observed in Amadi (17.6 USD). The main epilepsy-related expenditure was the purchase of anti-epileptic drugs (AED). Stigma scores correlated with epilepsy cost (Spearman-rho = 0.24, p < 0.001) and were positively associated with traditional medicine use (regression estimate = 1.9; p = 0.027). Conclusion:In rural South Sudan, PWE and their families often experienced stigma from the community. Higher perceived stigma was associated with traditional medicine use, which increased the overall cost of epilepsy management. Demystifying epilepsy and making AED more accessible would improve the quality of life of PWE and their families, and reduce the economic burden of epilepsy.

A peer support group intervention to decrease epilepsy-related stigma in an onchocerciasis-endemic area in Mahenge, Tanzania: A pilot study

“…The mixed effects linear regression model found that experiencing more seizures during the past week and having a history of physical abuse were associated with increased stigma scores. A high seizure frequency was also associated with high perceived stigma in Ethiopia [33] and South Sudan [21]; however, our findings contrast with a study conducted in Uganda [19] where seizure frequency was not associated with high perceived stigma. In the Ugandan study, having epilepsy-related physical deformities or injuries, having other chronic illnesses and longer duration of AED use were all associated with high perceived stigma.…”

“…In our study, only one PWE (in a village without PSG intervention) was found to have a stigma score >20 on the KSSE (prevalence of very high perceived stigma: 0.6%). This is much lower than the 6.7% of PWE who experienced very high perceived stigma in the South Sudanese study using the same cutoff [21]. When the 66th percentile of the collected data is used as cutoff for very high levels of stigma, our findings (32.9%) concur with those reported in other studies that used the KSSE: 34% in Uganda [19], and 31.2% in Ethiopia [20].…”

“…The overall mean stigma score was 3.7 ± 4.6. This is lower than the mean scores observed in a study in two onchocerciasis-endemic regions in South Sudan where the mean stigma scores were 13.9 ± 5.4 in Maridi and 6.5 ± 6.5 in Amadi using the KSSE tool [21]. In our study, only one PWE (in a village without PSG intervention) was found to have a stigma score >20 on the KSSE (prevalence of very high perceived stigma: 0.6%).…”

“…A total stigma score was calculated by addition of all item scores (15 questions). The continuous stigma scores were categorized in two ways: first using a cutoff value of 20 to define high stigma [21]; secondly, we also took scores above the 66th percentile of our collected data to be indicative of high perceived stigma [19,20].…”

“…A higher frequency of seizures was associated with increased levels of perceived stigma in Ethiopia [20]. Findings from South Sudan revealed a significant positive correlation between the use of traditional medicine and a high level of perceived stigma [21]. In Uganda, a longer use of the AEDs and having physical injuries related to epilepsy were associated with higher perceived stigma [19].…”