Bridging the Gap in Epilepsy Care for Refugees in Nakivale Settlement, Uganda

1. Background

Epilepsy is the most common noncommunicable brain disease, characterised by abnormal, excessive electrical discharges in the brain. According to the World Health Organization (WHO), epilepsy is a global public health concern affecting 50 million people, 80% of whom reside in low- and middle-income countries (LMICs) (WHO, national data). In Sub-Saharan Africa (SSA), epilepsy prevalence ranges from 2.0 to 134.5 per 1,000 individuals, with nearly 90% of cases occurring in people under 20 years old, who are also more prone to premature death compared to the general population. In LMICs, risk factors include birth injuries resulting from complicated pregnancies and childbirth; bacterial and parasitic infections such as meningitis, encephalitis, cerebral malaria, cysticercosis, and onchocerciasis; genetic predispositions; stroke; head trauma; and tumours [1,2].

A major concern is that 50% of people with epilepsy (PWE) also have at least one comorbid condition. These comorbidities complicate seizure control, lower quality of life, and increase dependency on others for daily care. Common neuropsychiatric comorbidities include autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), intellectual disability, psychosis, anxiety, behavioral disorders, and depressive disorders [2,3].

The WHO notes that with appropriate treatment, up to 70% of PWE could become seizure free and lead nearly normal lives. However, nearly three-quarters do not receive the treatment they need due to limited access to healthcare, insufficient training among health professionals, unavailability and high cost of antiseizure medications (ASMs), and pervasive misbeliefs and stigma surrounding epilepsy [4]. In Uganda, one study found that seven out of 10 PWE are unaware of their condition [5].

2. Epilepsy in forcibly displaced persons’ settings

Over the past decade, the global number of forcibly displaced people (FDP) steadily increased, reaching 108.4 million by the end of 2022 [6]. Although studies on the incidence and prevalence of epilepsy during this humanitarian crisis are limited, a scoping review by Hallab and Sen [7] found that epilepsy prevalence ranged from 0.2% to 39.13%. Prevalence was higher among individuals with pre-existing neurological or psychiatric comorbidities, and there is a tendency for increased incidence of epilepsy in children following wars. Furthermore, not only is the prevalence of epilepsy higher among FDP from war-affected regions compared to non-displaced populations, but individuals who previously had well-controlled seizures often experience an increase in seizure frequency during and after conflict, despite continued medication use. A 10-year study conducted in 175 refugee camps across 24 countries, including Uganda's Nakivale refugee settlement, revealed that epilepsy was the leading cause of visits to mental health settings, accounting for 44.4% (n=330,352) of consultations [8]. In addition to common etiologic factors, traumatic experiences, family separation, and malnutrition may contribute to the risk of developing epilepsy or to a poor prognosis, although the underlying pathophysiology remains unclear [7].

3. Nakivale refugee settlement

The epilepsy care project is being implemented in the Nakivale refugee settlement, located in southwestern Uganda in the Isingiro District, which borders the United Republic of Tanzania. The settlement is situated more than 260 km from Kampala, Uganda’s capital, and spans an area of 185 km². As one of Uganda’s oldest refugee settlements, Nakivale was established in 1958 and hosts refugees from Burundi, the Democratic Republic of the Congo (DRC), Eritrea, Ethiopia, Rwanda, Somalia, Sudan, and South Sudan. The settlement is subdivided into three zones—Juru, Base Camp, and Rubondo—which together encompass 79 villages (Fig. 1). Nakivale is served by four health centers—one grade III and three grade II—with the main referral centers being Mbarara Regional Referral Hospital (approximately 60 km away) and Rwekubo Health Center (approximately 12 km away), which is grade IV.

Fig. 1.

Nakivale refugee settlement is located near the Tanzania border in Isingiro district, Southern Uganda, which is the oldest refugee settlement in Africa (from United Nations High Commissioner for Refugees, The UN Refugee Agency; https://data.unhcr.org/en/documents/details/67893).

As of 30 June 2023, Uganda hosted 1,561,634 refugees, with 176,720 (11.3%) residing in Nakivale, making it the third largest refugee settlement in the country. The settlement is served by two psychiatric nurses. Among the 9,010 refugees identified as having specific needs by United Nations High Commissioner for Refugees (UNHCR) in 2020, those with serious medical conditions and disabilities constituted the largest group, accounting for 54.07% [8-11]. Given the high prevalence of epilepsy among FDP with disabilities, either due to underlying conditions or physical deformities resulting from seizures [7], it is possible that epilepsy prevalence is high among the 4,872 refugees with disabilities or serious health conditions. Mental health workers from Medical Teams International, Tutapona, and Transcultural Psychosocial Organisztion, who operate within the settlement, share this concern, as epilepsy has become the leading cause of consultations in their respective mental health facilities. There is often a shortage of generic ASMs, and alternative treatments—such as surgery, ketogenic diets, electroencephalography (EEG) monitoring, magnetic resonance imaging (MRI), genetic testing, physiotherapy, occupational therapy, and epilepsy awareness programs—are virtually nonexistent. More often than not, health workers prescribe medications that are available in their pharmacies rather than those appropriate for the specific seizure type or epilepsy syndrome, which can sometimes exacerbate seizures. Consequently, the impacts on FDP living with epilepsy are significant, ranging from a lack of awareness about their condition to uncontrolled seizures, poor neurodevelopmental outcomes, and premature death. In 2022, Bethesda Medical Center—a missionary hospital—and Bridge of Solidarity—a community-based organization—formed a team of epilepsy specialists and established networks to bridge this gap through a holistic, 5-year project.

1. Overview of the project

Through the community-based organization Bridge of Solidarity, a survey was conducted in 2021 after encountering several challenging epilepsy cases in the settlement. The survey aimed to determine whether the number of people living with epilepsy and their needs warranted an intervention in Nakivale. At that time, the team decided to intervene after identifying 52 cases in a short period. Most of these individuals were members of two refugee-led organizations operating on site; those who were not already members were encouraged to join these organizations to facilitate aid distribution. Following the survey, we analyzed the challenges and developed multifaceted strategies aimed at improving seizure outcomes and quality of life for PWE:

(1) Raising epilepsy awareness in the settlement to improve treatment adherence, demystify the condition, encourage individuals who have not sought medical care to do so, and reduce the stigma associated with epilepsy for both patients and their families.

(2) Enhancing health workers’ knowledge of epilepsy assessment and management in remote, low-resource settings to ensure timely diagnosis and appropriate medication dosing.

(3) Ensuring regular availability and access to generic ASMs.

(4) Increasing families’ financial income, as many PWE depend on caretakers who are unable to participate in income-generating activities. In the settlement, refugees generally rely on cash assistance of United States dollar (USD) 3 per individual per month provided by the World Food Program.

(5) Improving access to specialised education for children with epilepsy.

To implement this project, Bridge of Solidarity established partnerships with various organizations and conducted training sessions, as detailed below:

(1) Row foundation regularly supplies the ASM Roweepra (levetiracetam).

(2) Bethesda Medical Center contributed specialised staff—including a pediatric neurologist, nurses, ASMs, and free EEG—and partnered with another organization specialising in epilepsy advocacy and awareness, as well as on-site staff at Nyarugugu Health Center III.

(3) A local organization was engaged to assist families in initiating income-generating activities, thereby alleviating poverty, reducing malnutrition, and enabling better care for affected family members.

(4) Training was provided to village health team (VHT) members from the refugee community, who are responsible for identifying individuals exhibiting epilepsy symptoms such as temporal shaking, falls, loss of consciousness, incontinence, tongue biting, and abnormal sensations.

(5) Translators received training on epilepsy symptoms and the appropriate terminology in various languages to optimise communication between the medical team and caretakers. Languages used during our outreaches include English, Swahili, Kinyarwanda, Kirundi, Lunyankole, and occasionally French.

(6) Nurses from Bethesda Medical Center, Nyarugugu Health Center, and refugee nurses were encouraged to enrol in an online course offered by Pretola Global Health and Consulting to acquire advanced knowledge in epilepsy assessment and management.

As the main project stakeholders, Bridge of Solidarity and Bethesda Medical Center were committed to providing long-term support for PWE. To facilitate this, we established a memorandum of understanding with the Office of the Prime Minister, which oversees refugee affairs, to expedite access to the settlement—a process that is typically lengthy. This initiative, called ‘CARE FOR ALL,’ is planned to run for 5 years (Table 1).

Table 1.

Outreach program for the project ‘CARE FOR ALL’

2. Study design and selection of participants

Four epilepsy outreach visits were conducted quarterly from August 2022 to May 2023. Patients were consulted in three locations: Nyakagando village in the Rubondo Zone, Sangano village in the Base Camp Zone, and Nyarugugu Health Center III in the Base Camp. Two doctors participated in the project, each providing consultations for PWE over the course of 2 days during each outreach. On the first day, one doctor conducted consultations at Nyarugugu Health Center III alongside psychiatric health workers. Meanwhile, the second doctor conducted consultations in the community among members of a refugee-led organization in a remote village in the Nyakagando/Rubondo Zone, using venues such as churches or schools during holidays. On the second day, both doctors collaborated in community consultations in various villages within the Base Camp Zone, focusing on members of another refugee-led organization. Non-members of these organizations were also received, facilitated by the sensitisation efforts of VHTs. On-site teams consisted of translators, VHTs, and facilitators. During each outreach, we used scales to calculate the correct dosage of medications based on patients’ weight, provided ASMs that were unavailable at the health centers, offered epilepsy awareness education, and performed EEGs twice for the neediest patients.

A total of 161 PWE were seen—38 at the Health Center, 46 in Rubondo, and 77 in Base Camp. For data analysis, we excluded 38 patients from the Health Center due to incomplete data, 20 from Rubondo, and 19 from Base Camp because of irregular consultations (some of whom continued their migration to Kenya) or because they were new cases. Among the remaining 84 patients, we excluded three patients with febrile seizures and normal EEG findings; these individuals remain under observation.

3. Data collection and analysis

Data regarding demographic, clinical, and management characteristics were collected. Collected demographic data included age, sex, nationality, education level, and place of birth. Clinical features recorded included seizure type, monthly seizure frequency at both the initial and final consultations, age of onset, time elapsed before seeking medical care after seizure onset, comorbidities, and suspected risk factors (including birth and family history, history of severe febrile illness, coma or head trauma, and experiences of acute war-related stress). Management data included information on the most commonly used ASMs at the initial and final consultations, dosage accuracy, medication adherence before and after the intervention, and the investigations performed. EEG data were interpreted in collaboration with the co-authors, and data from 81 patients were analyzed using Microsoft Excel (Redmond, WC, USA). This study was exempt from review by the Institutional Review Board of Kyungpook National University Chilgok Hospital, with a waiver for informed consent (IRB no. KNUCH 2024-08-009).

The chi-square test was used to assess differences in seizure frequency between groups, with a P value of <0.05 considered statistically significant.

1. Demographic characteristics

A total of 81 patients were included in the study. Of these, the majority were male (65.4%, n=53), whereas females comprised 34.6% (n=28). In the Base Camp Zone, males outnumbered females nearly three to one, with 74.5% (n=41) male versus 25.4% (n=14) female. However, in the Rubondo Zone the proportion was reversed, with females slightly outnumbering males at 53.8% (n=14) versus 46.1% (n=12).

The majority of PWE attending our outreaches were young, with 77.8% (n=63) being under 18 years of age. The most represented age group was 6 to 12 years (38.3%, n=31), while the least represented group was those over 35 years (9.9%, n=8). Among the 18 adults (aged over 18 years), 12 (66.7%) were from the Rubondo Zone and six (33.3%) were from the Base Camp Zone.

The education level of our patients was generally low; 41 patients (50.6%) had only nursery, primary, or secondary education. Thirteen patients dropped out of school due to frequent seizures or because seizure episodes worsened by frustration related to stigma. The remaining 28 students generally performed poorly—some repeating the same grade for up to 5 years—largely due to learning difficulties, slow processing, and frequent absences caused by seizures. None of the patients had attained tertiary education. Three patients (3.7%) with normal cognitive function were below school age, two (2.5%) attended schools for children with special needs, and a significant number (n=35; 43.2%) had never attended school due to neurodevelopmental delays, poorly controlled seizures, or other neuropsychiatric disorders related to epilepsy.

During our outreaches, 29 individuals (35.8%) were born in the Nakivale settlement, while 52 (64.2%) were born in their countries of origin or in other refugee camps in the United Republic of Tanzania and the DRC.

Nationality data revealed that the most represented group was Congolese (58.0%), followed by Burundians (28.4%) and Rwandese (13.6%). These trends were similar in the Base Camp; however, in Rubondo, the majority were Burundians (46.1%), followed by Congolese (38.5%) and Rwandese (15.4%) (Table 2).

Table 2.

Demographic characteristics of the subjects

2. Clinical characteristics

1) Seizures

Most patients (n=42; 51.8%) experienced seizures with a focal onset. Among these, 24 patients exhibited impaired awareness with tonic-clonic, tonic, atonic, behavioral arrest, or motor seizures with versive movements, while 17 experienced focal to bilateral tonic-clonic or tonic seizures; one patient had focal aware tonic-clonic seizures. Generalized onset seizures were observed in 37 patients (45.7%): 29 had generalized tonic-clonic seizures, five had generalized atonic, tonic, or myoclonic seizures, and three had absence seizures. In two patients, the seizure type was not classified.

The largest proportion of patients (n=23; 28.4%) experienced epilepsy onset within the first year of life (<1 year), of which 16 (69.5%) were born in the Nakivale settlement. The smallest group (n=5; 6.2%) experienced onset between 13 and 18 years. The median age of seizure onset was 2 years (range, 0 to 49).

Regarding seizure frequency at the first consultation, 21 patients (25.9%) experienced approximately one seizure per month, 24 (29.6%) had two to four seizures, seven (8.7%) had five to 10 seizures, and 29 (35.8%) experienced between 11 and more than 60 seizures per month. Nine months later, 25 patients (30.9%) were seizure-free for more than 4 to 6 months, nine (11.1%) experienced one seizure, 31 (38.3%) had two to four seizures, 10 (12.3%) had five to 10 seizures, and six (7.4%) experienced between 11 and 60 seizures per month (Tables 3 and 4). These findings suggest that seizure frequency significantly decreased as a result of the project (P<0.05).

Table 3.

Clinical characteristics of seizures in the subjects

Table 4.

Seizure frequency in the subjects

2) Time taken to seek medical care

Fifty-three patients (65.4%) sought medical care within the first year after seizure onset, while 28 patients waited between 1 and 22 years to seek epilepsy management, resulting in a mean delay of 2.3 years (Table 5).

Table 5.

Time taken to seek medical care

3) Comorbidities

Comorbidities were categorised into three groups: neuropsychiatric, somatic, and neurologic. Neuropsychiatric disorders were the most common; intellectual impairment was observed in 57 patients (70.4%), ASD and ADHD in 29 (35.8%), learning difficulties in 28 (34.6%), and psychosis, post-traumatic stress disorder, behavioral, and mood disorders in 34 (42.0%). Low memory was noted in five patients (6.2%). Somatic conditions identified through history or clinical examination were present in 37 patients and included anaemia (n=19), physical wounds and contractile burn scars (n=12), hearing impairment (n=4), hypertension (n=1), sickle cell disease (n=1), albinism and vitiligo (n=2), and malnutrition (n=4), among others. Among neurologic comorbidities, cerebral palsy (including dyskinetic, ataxic, spastic hemiplegia, spastic quadriplegia, or spastic diplegia) was the most prevalent, observed in 22 of 31 patients with neurologic conditions. Other neurological comorbidities included migraine (n=2), congenital and acquired hydrocephalus (n=2), scoliosis (n=1), and dysphagia (n=2). Down syndrome was diagnosed in two patients (Fig. 2). All patients had at least one comorbid condition; 45.7% had one to two comorbidities, 43.2% had three to four, and 11.1% had five to six comorbid conditions.

Fig. 2.

Frequency of comorbidities in Nakivale refugee people with epilepsy. ASD, autism spectrum disorder; ADHD, attention deficit and hyperactivity disorder; HTN, hypertension; SCD, sickle cell disease; PTSD, post-traumatic stress disorders; TS, turner syndrome.

4) Epilepsy risk factors

Based on patient history, suspected risk factors for epilepsy were identified in 72 patients (88.9%). Of these, 25 patients (34.7%) reported antenatal and perinatal complications, including hypoxic-ischemic encephalopathy (n=21), chemical exposure (n=1), prematurity (n=1), low birth weight (n=1), and hypothermia (n=1). Central nervous system (CNS) infections and other febrile illnesses were reported in 21 patients (29.2%), a family history of epilepsy in 16 (22.2%), psychological war-related trauma in 13 (18.0%), and head trauma due to war injuries in seven (9.7%). Fourteen patients (approximately 20%) had two to three combined risk factors (Fig. 3).

Fig. 3.

Risk factors of the people with epilepsy in Nakivale refugee. History of antenatal and perinatal complications is mainly hypoxic ischemic encephalopathy (n=21) and others are prematurity (n=1), very low birth weight (n=1), exposure to human immunodeficiency virus/antiretroviral therapy (n=1), and hypothermia (n=1). CNS, central nervous system; SCD, sickle cell disease.

3. Management characteristics

During the first outreach, 39 patients (48.1%) were not taking any ASM. Of these, 25 (64.1%) reported that the Health Center did not supply the medication due to shortages, nine (23.1%) were noncompliant with treatment, and five (12.8%) were new to seeking medical care. Among the remaining 42 patients (51.8%) who were receiving treatment, 23 were on a suboptimal (low) dosage. Carbamazepine was the most commonly used ASM, administered to 31 patients (38.2%), followed by phenytoin (n=9; 11.1%), phenobarbital (n=4; 4.9%), sodium valproate (n=2; 2.5%), and lamotrigine (n=2; 2.5%). At the final consultation, the use of carbamazepine increased to 59.2% (n=48), followed by levetiracetam at 29.6% (n=24), phenytoin at 21% (n=17), sodium valproate at 18.5% (n=15), phenobarbital at 6.2% (n=5), and lamotrigine at 2.5% (n=2) (Fig. 4). During the first visit, the majority of patients (n=36) were on monotherapy, with 20 of these receiving a low dosage; six patients were on two-drug regimens (with half receiving low dosages), and none were on three-drug regimens. By the fourth outreach, 55 patients (67.9%) were on monotherapy, 22 (27.1%) were on bitherapy, and four (4.9%) were on tritherapy (Table 6). Of the 81 patients, 12 (14.8%) had undergone an EEG and brain computed tomography (CT) scan, while the remaining 69 (85.2%) had not undergone any diagnostic tests. No patients underwent MRI, genetic testing, or blood workup.

Fig. 4.

Change of antiseizure medicine regimen during follow up period. Solid and blue shows the using frequencies of antiseizure medications in first consultation, orange and diagonal stripes shows the using frequencies of antiseizure medications in last consultation. CBZ, carbamazepine; PHT, phenytoin; PB, phenobarbital; LEV, levetiracetam; VPA, sodium valproate; LMT, lamotrigine.

Table 6.

Number of antiseizure medications per patient and their dosage