Impact of poorly controlled epilepsy in the Republic of Guinea

Purpose: To characterize people with epilepsy (PWE) presenting to a free neurology consultation and antiepileptic drug (AED) service in the Republic of Guinea. Methods: Guinea is a low-income country in West Africa that recently experienced an Ebola Virus Disease epidemic. Community-dwelling PWE were seen at a public referral hospital in Conakry, the capital city. During two visits in 2017, an African-U.S. team performed structured interviews and electroencephalograms and provided AEDs. Results: Of 257 participants (143 children, 122 female), 25% had untreated epilepsy and 72% met our criteria for poorly controlled epilepsy. 59% had >100 lifetime seizures, and 58% reported a history consistent with status epilepticus. 38 school-aged children were not in school and 26 adults were unemployed. 115 were not currently taking an AED, including 50 participants who had previously taken an AED and stopped. Commonly cited reasons for AED discontinuation were perceived side effects, unaffordability, and unavailability of AEDs. Traditional medicine use was more frequent among children versus adults (92/143 vs. 60/114, p = 0.048). 57 participants had head injuries, 29 had burns, and 18 had fractures. In a multivariable regression analysis, >100 lifetime seizure count was strongly associated with seizure-related injury (p < 0.001). Burns were more likely to occur among females (p = 0.02). Conclusions: There is an urgent need to improve the standard of care for PWE in Guinea. Several missed opportunities were identified, including low use of AEDs and high use of traditional medicines, particularly in children. Targeted programs should be developed to prevent unintentional injury and improve seizure control.