02492nas a2200241   4500000000100000008004100001260001600042653001500058653003900073653001900112653001900131100001300150700001200163700001600175700001800191700001300209700001000222700001900232700001800251245009800269520186900367022001402236       2024                            d  bElsevier BV10aEvaluation10aOnchocerciasis-associated epilepsy10aEvidence-based10aStigmatization1 aKamoen O1 aJada SR1 aRovarini JM1 aAbd-Elfarag G1 aAmaral L1 aBol Y1 aSiewe Fodjo JN1 aColebunders R00aEvaluating epilepsy management in an onchocerciasis-endemic area: Case of Maridi, South Sudan3 a<p id="cesectitle0003"><strong>Purpose:</strong> The epilepsy prevalence in Maridi County, South Sudan, in 2018 was 43.8 (95% CI: 40.9–47.0) per 1000 persons; 85.2% of the identified persons with epilepsy (PWE) met the criteria of onchocerciasis-associated epilepsy. To address this health problem, an epilepsy clinic was established at Maridi County Hospital in 2020. In August 2023, the impact of the clinic on the lives of PWE and their families was evaluated.</p>

<p id="cesectitle0004"><strong>Methods:</strong> At the Maridi epilepsy clinic, data routinely collected by primary healthcare workers as part of patient care was reviewed. We also analyzed findings from two household surveys conducted in 2018 and 2022, which assessed the impact of the clinic on epilepsy care. Moreover, four households, each with four PWE, were visited in a high epilepsy prevalence area. PWE were examined by a neurologist, and in-depth interviews were conducted with family members.</p>

<p id="cesectitle0005"><strong>Results: </strong>The proportion of PWE on anti-seizure medication increased by 39.7% (95%CI: 35.3–44.2) between 2018 and 2022. The proportion of PWE reporting daily seizures decreased from 27.3% in 2018 to 5.3% in 2022. Of the 754 PWE seen in the clinic in July 2023, only 17 (2.3%) reported side effects. During household visits in July 2023, 13/173 (7.5%) of the visited PWE were found without remaining anti-seizure medication. A high level of epilepsy-related stigma was observed in all visited households.</p>

<p id="cesectitle0006"><strong>Conclusion: </strong>The Maridi epilepsy clinic positively impacted the lives of PWE in Maridi. Similar initiatives should be accessible for all PWE living in onchocerciasis-endemic areas. Evidence-based information about OAE is needed to decrease misconceptions and epilepsy-related stigma.</p>
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