Stories From the Field:

Guinea

Global Neurology in Guinea

Our time in Guinea was spent working at Ignace Deen Hospital (IDH) in the capital city of Conakry. Guinea is a country in West Africa with a population of approximately 12 million people, and was recently publicized for the large Ebola outbreak from 2014-2016. Conakry is the largest city in Guinea and is located on Kaloum Peninsula. Ignace Deen Hospital is one of three hospitals in the city, which has a population of an estimated 2 million people.

While in Guinea, we worked to establish a study on implementing a smartphone-based EEG for epilepsy patients. We met with local collaborators and IRB officials to finalize study set up and spent the final week conducting free epilepsy consultations for patients at IDH. EEGs are the standard of care for epilepsy patients in high income settings but are often unavailable in many locations around the world. The smartphone-based EEG device is significantly less expensive than standard EEG equipment, it does not require a trained technician to operate, it is battery powered and does not require consistent electrical supply during use, and files are small and can be transferred over email. These features address many of the main issues that result in its lack of availability in resource-limited settings.

In Guinea, many people believe that epilepsy has a spiritual rather than biological cause. As a result, many patients seek care through traditional and religious healers rather than neurologists or other healthcare workers. Epilepsy is stigmatized because of this and many people stop going to school or work, or in some cases stop leaving their homes entirely. To help improve the perception of epilepsy, we were interviewed at the national TV station (Radio TV Guinea) about epilepsy, its causes, and available treatments at the hospitals in Conakry. This also assisted in promoting the proposed project and recruiting patients to come in for consultations the following week.

EEG services are not typically available in Guinea, and other imaging or complicated diagnostic procedures are often referred to neighboring countries. Although antiepileptic drugs (AEDs) are relatively inexpensive and available through local pharmacies, many patients cannot afford to take their medications consistently, if at all. Testing for drug levels is also unavailable, so tailoring treatments to provide the correct dosing is often difficult. These factors as well as the cultural beliefs surrounding epilepsy contribute to the prevalence of uncontrolled epilepsy and contribute to the growing public health problem.

The following week we were able to conduct over 130 epilepsy consultations at the hospital for patients in Conakry as well as some who traveled as far as 800km. Many patients reported seizure related injuries; broken bones, burns, head injuries, car accidents and falls were common. Over half of the patients reported 100 seizures or more in their life time. For many of these patients, this consult was the first time seeing a doctor about their condition.

There is limited data on epilepsy in Guinea, including only one study conducted by a local neurologist in 2004. We are currently working on getting approval to publish clinical data from the consultations during the trip, which would provide a picture of the state of epilepsy care in Guinea and provide baseline data for future work in the country.

Recruitment for the study will begin on the next trip to Guinea, and will involve implementing the smartphone-based EEG in this setting. Participants will be recruited at IDH and randomized into two arms. One will receive a smartphone-based EEG and will have their epilepsy treatment changed accordingly. The other will receive the standard of care for epilepsy at IDH. We will follow up with each participant after six months to determine if their quality of life and seizure frequency was impacted by the intervention. Part of this work will also include continuing to raise awareness of epilepsy as a brain disorder so that it will be better understood and not feared as it is now.