p01 Histological changes in the brains of persons who died with nodding syndrome and other forms of epilepsy in northern Uganda
An Hotterbeekx1, Sylvester Onzivua2, Martin Lammens3, Samir Kumar-Singh1, Robert Lukande2, Richard Idro2, Geoffrey Akena4, Robert Colebunders1
1University of Antwerp, Antwerp, Belgium; 2Makerere University, Kampala, Uganda; 3University hospital of Antwerp, Antwerp, Belgium; 4Kitgum hospital, Kitgum Uganda
Purpose: To describe the pathological changes in individuals who died with nodding syndrome (NS) or other forms of epilepsy in northern Uganda.
Method: A complete post-mortem examination was performed and clinical information was obtained from the next of kin. Formalin fixed brain samples were embedded in paraffin and stained by haematoxylin-eosin and immunohistochemistry to stain astrocytes (GFAP), macrophages (CD68), Ubiquitin and protein tau (AT8).
Results: The brains of 7 persons with NS and 2 with other seizure types were examined, 6 males and 3 females, aged between 16 and 23 years. The cerebellum showed atrophy and loss of Purkinje cells at the top of the folia, with hyperplasia of the Bergmann glia. Various degrees of focal gliosis and signs of past ventriculitis and/or meningitis were observed in 8 cases. Clusters of CD68-positive macrophages were observed in the medulla oblongata, dentate nucleus, cerebellar vermis, thalamic- and hypothalamic regions and parietal cortex. Mild to sparse tau-reactive neurofibrillary tangles and threads were observed in 6, preferentially in the frontal and parietal cortex at the top of the gyri, thalamic- and hypothalamic regions, mesencephalon and corpus callosum. Ubiquitin staining confirmed the presence of neurofibrillary tangles, no Lewy bodies were observed. Sparse hippocampus sclerosis was observed in 2.
Conclusion: Pathological changes in the brain of persons with NS are characterized by loss of neurons, especially Purkinje cells with mild infiltration of microglia and foci of gliosis, and signs of ventriculitis. Contrary to previous research there was no generalized tauopathy.
p02 Cost evaluation of the epilepsy management in patients following in Fann Teaching Hospital of Dakar (Senegal)
Eric Gueumekane Bila Lamou
Ministry of Public health, Yaounde, Cameroon
Purpose: Epilepsy, a major public health problem, in addition to its serious medical and social consequences, also has a cost. This cost is difficult to identify in sub-Saharan Africa because of numerous contingencies
Method: We conducted a cross-sectional study over a period of 3 months (January to March 2016) at FANN’s Teaching Hospital. Included in our study was any known epileptic patient regardless of age and gender, who had been regularly observed in our department for over a year and who had consented to the study. Our sample was 59 patients. The data analysis was done on the statistical analysis software Epi info version 3.5.
Results: Men predominated (sex ratio of 1.68) for predominantly urban origins and a low level of education (65% of primary level) and limited resources (+++ without profession and non-salaried). 91.5% had their first seizure for more than a year for an overall average follow-up of 6.85 years. Typically generalized crises were mostly monthly. The overall average direct cost was estimated at 6,451.86 Euros, the average overall indirect cost was estimated at 1,074 Euros, and the cost of traditional treatment estimated at 688.93 Euros.
Conclusion: A good knowledge of the direct costs and indirect costs of epilepsy would help to optimize the real needs of epileptics for good planning of public health actions to improve their care
p03 Mbarara Epilepsy Project (MEP)
Moses Kibuuka1, Godfrey Zari Rukundo2, Frances St John3
1Barts Health NHS Trust- the Royal London hospital, London, United Kingdom; 2Mbarara University of Science and Technology, Mbarara, Uganda; 3East London NHS Foundation Trust, London, United Kingdom
Purpose: The East London NHS foundation trust (ELFT) UK, Mbarara university of science and technology (MUST) and the Mbarara regional referral hospital (MRRH) Uganda, have a strong history of collaboration and project implementation under the Butabika East London foundation trust link. Using a start -up grant from the Tropical health and education trust (THET) UK through the Health partnership scheme (HPS) UK, a needs assessment relating to the accessibility of epilepsy services in south west Uganda was carried out, raising the scale of the epilepsy problem in Uganda. Epilepsy is a stigmatized condition and the social consequences can be worse than the disorder itself. MEP was established with the objective of making services to children and adolescents with epilepsy in Mbarara district Uganda more accessible through training and improving service utilization.
AIM: To build local capacity for the early assessment, recognition and treatment of epilepsy in Mbarara district through training and improving service utilization health.
Method: Training mental health works (TOTS) at MRRH in better recognition, understanding and management of epilepsy. Cascaded Training of Primary health workers (PHWS) and Village Health teams (VHTS) by the TOTS in south west Uganda.
Results: 9 mental health workers (TOTS) , 37 PHWS AND 88 VHTS trained. EEG technology was implemented for the first time in southwest uganda to aid in the diagnosis, management and treatment of epilepsy.
Conclusion: More children and young people with epilepsy are being identified early and directed towards appropriate medical care
p04 Knowledge, attitudes and practices of general practitioners of Bujumbura city regarding epilepsy
University of Burundi, Bujumbura, Burundi
Purpose: To evaluate the knowledge, attitudes and practices implemented by general practitioners regarding epilepsy
Method: a descriptive cross-sectional study carried out with the general practitioners of the Bujumbura City on knowledge, attitudes and practices regarding epilepsy. Our study covered a period of 2 months, from July 1, 2018 to August 30, 2018
Results: Our study focused on 105 physicians. Their average age was 32.49 years with a sex ratio of 1.6 in favour of men. 88.57% had seniority less than 5 years in the practice of the profession. 12.38% of the physicians surveyed said they had a correct training on epilepsy. 49.5% defined epilepsy correctly. 80.95% thought that brain tumors were the leading cause of epilepsy, followed by head trauma (77.14%). 28.57% of physicians thought of lack of sleep as the main trigger, followed by discontinuation of medication (21.90%). 70.48% said that epilepsy is curable. Among the attitudes made during a crisis; 80.9% protected the head; 77.14% removed objects and 54.28% put a tongue in the mouth. 43.81% prescribed Depakin in the first place. In case of treatment failure; 61, 90% referred the patients to the specialist, 42, 85% changed molecules, 36,2% associated other molecules; 30.47% increased the dose.
Conclusion: Epilepsy is a public health problem all over the world. The results of our study highlighted gaps in physicians’ knowledge and practices. The correction of these deficiencies as well as the therapeutic education of epileptic patients would help to improve its management.
p05 A two-track approach in fostering sustainability of epilepsy care and reducing treatment gap: an innovative model of epilepsy surgery in Ethiopia
Eunik Son, Tsegazeab Laeke Teklemariam
Addis Ababa University School of Medicine & MCM general hospital, Addis Ababa, Ethiopia
Purpose: This article proposes a model to monitor and medical treatment of epilepsy before advanced technology of epilepsy surgery is required, particularly in rural areas in developing countries. It also suggests a feasible referral scheme for those patients who need advanced medical and surgical management for patients with epilepsy.
Method: This is a descriptive study on a proposed outreach model for epilepsy treatment and community awareness creation in remote areas of resource limited set up. The model utilizes accessible methods in the local set up to decrease the epilepsy treatment gap. It depicts the referral chain and advanced diagnostic and surgical treatment options for those with poorly controlled seizure.
Results: A total of 337 epileptic patients were seen since February 2018 at three centers in the rural cities of Ethiopia: Yabelo, Fiche and Bulbula. Preliminary results were as follows: 1) The treatment gap, the number of patients with no history of previous medical treatment for epilepsy, was 154(45.7%). 2) Age distribution under age of 20 was 58%. 3) Surgical outcome after initial trial of anti epileptic drugs showed seizure free in 63%.
Conclusion: Treatment of epilepsy in a limited resource setup requires an outreach approach including educating the society, initiating treatment at the local setup and facilitating a referral system for those with poorly controlled seizure and needing further investigation and surgical treatment. Authors will introduce a simultaneous two-track approach in fostering sustainability of epilepsy care and reducing treatment gap as an innovative model of epilepsy surgery in Ethiopia.
p06 Neurological Diseases and Healthcare Professionals at Moi Teaching and Referral Hospital, Kenya
Jane von Gaudecker1, Chrispine Oduor2, Jamil Said3
1Indiana University, Indianapolis, USA; 2Moi University, Eldoret, Kenya; 3Moi Teaching and Referral Hospital, Eldoret, Kenya
Purpose: The purpose of this study was to explore the prevalence of neurological diseases, describe the demographics and disease related details, and describe the healthcare professionals (HCPs) who provide care for patients with neurological diseases at Moi Teaching and Referral Hospital (MTRH), a tier 4 tertiary referral hospital in western Kenya.
Method: A 3-month neurological disease prevalence study is currently being conducted at MTRH inpatient and outpatient settings. Patients are screened daily through review of admission/medical records, and followed up with a patient survey. Health Care providers were surveyed face to face.
Results: At 1.5 months, 816 patients (adults n=526; pediatrics n=290) were identified. Mean age was 31.05 years (SD 24.71); 59% were male. Primary causes of disease were trauma, HIV, and bacterial; 53% of patients were not on biomedical treatment for their neurological disease and 10% of of patients on treatment reported, 10.2% non-adherence. Reasons included cost, distance to medical facility, initiating traditional treatment; Most children (66%) and 17% of adults had a diagnosis of epilepsy.
We surveyed 266 HCPs (82% nurses, 11% physicians, 8% clinical officers). Most HCPs (90%) reported not receiving training related to neurological diseases.
Conclusion: Epilepsy is the most common neurological diagnosis reported among children and accounts for almost one fifth of all adult diagnosis. None of the HCPs had formal training in epilepsy care. We will conclude the study in May 2019 when a final report will be presented.
p07 Mobile Health for Remote Monitoring of Epilepsy in South African Children
Karen Fieggen1, Jo Wilmshurst1, Dimitra Blana2, Elin Davies2
1University of Cape Town, Cape Town, South Africa; 2Aparito, London, United Kingdom
Purpose: This study aims to gather preliminary data on the feasibility of remote monitoring with wearable devices and smart phones in a cohort of South African children with refractory epilepsy.
Method: We aim to recruit 40 patients and monitor them using the technology for a period of up to 9 months. A smart phone application developed by Aparito (www.aparito.com) is downloaded and a wearable device provided where tolerated. On the app, carers record health visits, medication adherence following reminders, seizure frequency and video capture in real time, as well as Patient Reported Outcomes.
Results: 17 female and 20 male patients ranging in age from 4-16 years have been onboarded so far. 38% of children live in informal housing with >60% sharing a bed. Five children are cared for only by a grandmother. More than 40% had a documented history of non-adherence. Four do not use a wearable and six have withdrawn. The engagement rate for the wearable ranges from 1.1% to 100% (mean: 45.7%, median: 40.2%), while the completion rate for the Patient Reported Outcomes ranges from 2.0% to 92.5% (mean: 25.1%, median: 19.2%). Challenges have included lack of familiarity with technology, high cost of cellular data as well as theft and loss of devices and phones.
Conclusion: Our study provides insight into the challenges of using mobile phones and simple wearable technology to monitor epilepsy in Africa, and explores its potential in supporting healthcare provision for all patients, regardless of their geographical location and social circumstances.
p08 Exploring Health Care Provider Needs for Epilepsy Care in Uganda
Anthony Fuller1, Angelina Kakooza2, Rose Muhindo3, Caleigh Smith1, Olivia Ratliff1, Grace Cai1, Josephine Najjuma3, Deborah Koltai1
1Duke University, Durham, USA; 2Makerere University, Kampala, Uganda; 3Mbarara University, Mbarara, Uganda
Purpose: To identify challenges facing epilepsy care providers in Uganda to inform future educational interventions.
Method: A mixed methods study was conducted with health care providers (n=32) involved in the care of epilepsy patients at varied health care centers and hospitals within Mbarara town, western Uganda. Qualitative focus groups invited discussion of resource deficiencies, social barriers, gaps in training, and other challenges, while quantitative surveys provided proficiency ratings and knowledge-based test scores.
Results: Focus group participants consistently reported the following needs for facilitating progress in epilepsy care: a) Community sensitization to prompt access to biomedical care, b) Specialty training and continuing education, c) Increase amount and type of medications and maintain supply chain. In the surveys, participants rated themselves highest on knowledge of referral pathways and the impact of epilepsy on social, academic and functional outcomes and lowest on the use of diagnostic tools, studies for diagnosis and treatment, the use of mono- and polytherapy, and knowing when to switch medication regimens. Self-reported proficiencies were not related to knowledge test scores (r=.14, p=.45). While physicians and residents (n=11) did not differ in proficiency ratings compared to the rest of the sample (p=.51), their knowledge scores were somewhat higher (p=.03).
Conclusion: Future interventions to improve epilepsy care in Uganda should encompass sensitization efforts as well as address inadequate human resources and medication supply. Epilepsy education may be tailored to specific provider groups, but further study is needed to determine if previous training or care settings account for differences in content expertise.
p09 Utilization of the Addis Clinic telemedicine platform for epilepsy care, past experience and future opportunities.
Yael Shiloh-Malawsky, Angela Wabulya
The University of North Carolina At Chapel Hill, Chapel Hill, USA
Purpose: Given the limited availability of specialty, sub-specialty, and physician care in areas around the world, The Addis Clinic was founded with the goal to connect volunteer physicians with local organizations providing front-line healthcare to vulnerable and underserved populations. The organization utilizes telemedicine to connect skilled physicians with underserved patients around the world by partnering with local organizations serving in resource limited settings.
We reviewed prior years’ epilepsy related consultations through the Addis Clinic’s telemedicine platform. Assess utilization of the organization’s services for support of community-based epilepsy care.
Method: Review of database of the Addis Clinic teleconsultations, and specific cases related to epilepsy. Demographics of patients, local providers and specific consultation questions.
Neurology epilepsy specialists and Addis Clinic leadership discussed the results and reviewed future opportunities to expand and increase the impact of the service on epilepsy care.
Results: Of total of 337 cases, and 563 teleconsultations conducted by the Addis Clinic in 2018 only 4 cases were related to epilepsy.
Discussion between epileptoligists and the Addis Clinic leadership raised multiple opportunities for increased epilepsy consultation of the platform. Recruiting additional neurology and epilepsy specialists volunteers, connecting with new local healthcare organizations for partnerships, using the platform for education and training of local providers.
Conclusion: Telemedicine provides a platform that can provide epilepsy specialists consult in regions of low resources and limited specialist access. Utilization of the Addis Clinic services for epilepsy is low. Connecting with local organizations and increasing volunteer base may increase utilization for the benefit of epilepsy patients.
p10 Re-establishing a sustainable epilepsy surgical treatment center in Uganda
Angela Wabulya1, Mark KadduMukasa2, Peter Ssenyonga3
1UNC- Chapel Hill, Chapel Hill, USA; 2Makerere University, Kampala Uganda and Mulago Hospital, Kampala, Uganda; 3CURE Children’s Hospital of Uganda, Mbale, Uganda
Purpose: Highlight challenges of re-establishing and maintaining an epilepsy surgical treatment center in Uganda and possible solutions
Appropriately, the focus on epilepsy care in under-served regions has been on access, stigma and medical therapy, however, approximately 30 to 40% of people with epilepsy have seizures that are not controlled by medication and are left with no options. The feasibility of an epilepsy surgical treatment in sub-Saharan African was published with 60% of medically refractory epilepsy patients achieving seizure freedom. Unfortunately, this program was not sustainable and closed. Given previous success and need, I set out to assess the feasibility of re-establishing a self-sustainable epilepsy program in Uganda.
Method: Method: Retrospective review of the published process that led to initial epilepsy surgical cases Uganda alongside interviewing of some stake holders in involved in medical and surgical treatment of in Uganda.
Results: There were at least 3 medical groups involved in epilepsy care projects in Uganda, however, while vertical communication was noted, lateral communication was less appreciated. The scope of work included; epidemiology of epilepsy, capacity building for epilepsy care and epilepsy surgery. It was amazing to see how each could benefit from each with more lateral communications and in some cases, avoid repetition of activities such as re-training of staff among others for more cost -effective outcomes.
Conclusion: Re-establishing sustainable epilepsy surgical treatment centers in Uganda as well as other under resourced regions requires collaborative efforts among different stake holders, a factor that might be considered when providing support for epilepsy services in these regions.
p11 Epidemiological and clinical profile of epileptic patients in a hospital cohort in Lubumbashi, Democratic Republic of Congo
Olivier Mukuku1, Marcellin Bugeme2, Pascal Nawej3, Franck Nduu3
1Institut Supérieur des Techniques Médicales de Lubumbashi, Lubumbashi, Congo, Dem. Rep. of; 2Université de Lubumbashi, Lubumbashi, Congo, Dem. Rep. of; 3Centre Médical Du Centre-Ville (CMDC) de Lubumbashi, Lubumbashi, Congo, Dem. Rep. of
Purpose: The purpose of our work is to study at the hospital level the profile of epileptic patients. This will enable us to analyze the socio-demographic aspects, the semiology of epileptic seizures as well as their etiologies.
Method: A prospective descriptive study of 177 epileptic seizures was conducted at the Centre Médical du Centre Ville (CMDC) of Lubumbashi. The study was conducted from January 2016 to December 2017.
Results: The age of the patients ranged from 5 months to 86 years and averaged 19.97 years. The male sex was found in 101 patients giving a sex ratio (M/F) of 1.33. The average age of patients with seizures was 13.1 years (range: 5 days and 85.5 years). The average duration between onset of seizures and consultation was 83.5 months (range: 10 days and 440 months). 48 (27.68%) patients had a family history of epilepsy. Etiology was found only in 68 (38.4%) patients. The main etiologies were neurocysticercosis (26.5%), meningitis (25%), cranioencephalic trauma (20.6%) and neonatal pathologies (20.6%). Generalized tonic-clonic seizures were the most frequent (65.5%), followed by atonic generalized seizures (9.6%) and partial clonic seizures (8.5%).
Conclusion: This study is a useful starting point from which health programs and health professionals can work to improve the diagnosis and quality of care.
p13 Prevalence and factors associated with Epilepsy among HIV infected Adult patients taking ART in Adama Hospital Medical College Oromia Regional State, Ethiopia.
Adama Hospital Medical College, Adama, Ethiopia
Purpose: To assess the prevalence and factors associated with epilepsy among HIV infected adult patients who were on Anti-retro viral therapy in Adama Hospital Medical College, Oromia Regional State, Ethiopia.
Method: Hospital based cross-sectional study was conducted among 748 HIV infected adult patients on Anti-retro viral treatment.Data was collected using pretested structured questionnaire. The collected data was entered using Epi Info version 7 and exported to SPSS version 21 for analysis. Bivariate and multi variable binary logistic regression analyses were conducted to determine the association between the study variables.
Results: Age between 27 to 35 years (AOR, 4.10; 95% CI: 1.24, 14.10), level of education (AOR, 8.50; 95% CI: 3.76, 19.31), alcohol drinking (AOR, 8.73; 95% CI: 4.46, 17.09), and CD4 count (AOR, 45; 95% CI 22.23, 92.39) were factors significantly associated with epilepsy among HIV infected adult patients taking Anti-retro viral therapy.
Conclusion: Age, educational status, drinking alcohol and CD4 count less than 200 were significantly associated with Epilepsy among HIV infected adults. Health Education should be given for younger ages to avoid drinking alcohol. Education and awareness creation should be given to the community on early initiation of ART regardless of the CD4 level.
p14 Clinical presentation of epilepsy in six villages in an onchocerciasis endemic area in Mahenge, Tanzania
Dan Bhwana1, Bruno Mmbando1, Marieke Dekker2, Mohamed Mnacho3, Robert Colebunders4, William Matuja3, Williams Makunde1, Sarah Weckhuysen5
1National Institute for Medical Research, Tanga, Tanzania; 2Kilimanjaro Christian Medical Centre, Moshi, Tanzania; 3Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania; 4Global Health Institute, Antwerp, Belgium; 5University hospital Antwerp, Antwerp, Belgium
Purpose: To describe the clinical manifestations of epilepsy and access to anti-epileptic treatment in Mahenge in Central Tanzania, an onchocerciasis endemic area with a high prevalence of epilepsy
Method: A door to door epilepsy prevalence survey was conducted in 4 rural and 2 sub-urban villages. Trained community workers used 5 screening questions to identify persons suspected to have epilepsy. Such individuals were interviewed and examined by a neurologist or a medical doctor with additional training in epilepsy and were tested for Onchocerca volvulus antibodies
Results: A total of 221 out of 8062 (2.74%) surveyed individuals were confirmed to have epilepsy. The median age of seizure onset was 12 years (interquartile range 7-16). 79 PWE (36.1%) had a family member with epilepsy; in 52.1% a sibling. Tonic-clonic seizures (64.2%) were the most common seizure type. Nodding seizures were reported in 12.7%. Persons with nodding seizures reported more frequent seizures, presented more psychiatric symptoms and had more often onchocerciasis antibodies than those with other forms of seizure types. The high rate of individuals with a seizure onset between 7-16 years is characteristic of onchocerciasis-associated epilepsy (OAE); 77.9% of PWE met the OAE criteria. 37.6% of PWE were not taking any anti-epileptic medication.
Conclusion: The high prevalence of epilepsy in rural villages in Mahenge most likely is related to the high prevalence of OAE. To prevent children to develop OAE, strengthening the onchocerciasis elimination programme in Mahenge is urgently needed. Moreover, a decentralised epilepsy treatment programme should be established in the area.
p15 Climatic, clinical and infectious predictors of frequent epileptic seizures in rural Kenya
Symon Kariuki1, Anthony Ngugi2, Gathoni Kamuyu1, Charles Newton1
1KEMRI-Wellcome Trust Research Programme, Kilifi, Kenya; 2Aga Khan University of East Africa, Nairobi, Kenya
Purpose: The large epilepsy treatment gap in Africa may result in frequent uncontrolled seizures that are associated with neurobehavioural impairments and poor quality of life among people with epilepsy. We estimated the burden of frequent epileptic seizures and determined associated risk factors in Africans with epilepsy using a community-based sample.
Method: We documented the number and frequency of seizures as well as climatic clinical and infectious risk factors among 766 people with epilepsy identified in a population-based study conducted in 2008. Associations of risk factors with frequent seizures were performed using negative binomial regression and log-binomial regression models, where appropriate. Multiplicative and biological interactions between risk factors for seizure frequency were examined.
Results: Of the 766 people with epilepsy, 83.2% (95%CI: 80.4-85.8%) had experienced excess (>10) epileptic seizures, with daily seizures reported by 12.7% (95%CI: 10.5-15.3%). The most important risk factors for frequent seizures were intellectual disability (risk ratio (RR)=3.36 (95%CI:2.44-4.62) for ordered frequent seizures), traditional treatment (incident RR=1.23 (95%CI:1.16-1.30) for number of seizures) and abnormal EEG ((RR=1.19 (1.09-1.29)) for excess frequent seizures). Rainfall was associated with reduced frequent seizures (odds ratio=0.80 (95%CI:0.68-0.93)). The risk for frequent epileptic seizures was determined by interaction between HIV and intellectual disability (IRR=1.12 (95%CI: 1.04-1.20) for number of seizures) and between altitude elevation and malaria exposure for ordered frequent seizures (relative excess risk of interaction (RERI)=0.84 (95%CI:0.48-1.21)).
Conclusion: Clinical, climatic and infectious factors determine the burden of frequent epileptic seizures in Africa and should be discussed with people with epilepsy and, where possible, addressed.
p16 Clinical Profile and Outcome of Children Admitted with Acute Seizures at Parirenyatwa and Harare Tertiary Hospitals In Zimbabwe
Tichasvika Mwoyofiri, Gwendoline Kandawasvika, Kussum Nathoo
University of Zimbabwe, Harare, Zimbabwe
Purpose: To describe the clinical profile, possible causes, mortality and neurological motor outcomes of children hospitalised with acute seizures at two tertiary hospitals in Harare.
Method: Study design: Hospital based, cross-sectional study.
Participants: Children aged 6 months to 12 years admitted with acute seizures at two tertiary Hospitals in Harare, Zimbabwe. Known epileptic patients were excluded.
Study factors: Demographics, clinical profile, and causes of acute seizures.
Outcome factors: Status epilepticus, mortality and neurological motor function at discharge.
Results: A total of 191 children were recruited, of whom 116 (60.7%) were males. Seizures were more common in younger children (6-59 months) than in older children (5-12 years). One hundred and seventy-two (90.1%) had generalized seizures and 19 (9.9%) had focal seizures. The presence of fever (Adjusted Odds Ratio (AOR)=4.39, CI: 1.36-14.22) or focal seizure (AOR=7.75, CI:1.85-32.51) was independently associated with the development of status epilepticus. Febrile seizures occurred in 113 (59.2%) of the study participants. Malaria was the second commonest diagnosis in 21 (11%), of whom 20 (95.2%) presented with generalized seizures. Clinical meningitis was independently associated with death (AOR=342.62, CI:34.30-569.34). Status epilepticus was present in 14.7%, and was independently associated with mortality (AOR=75.88, CI: 12.37 – 465.37).
Conclusion: Seizures were more common in younger children (6-59 months) than in older children (5-12 years) with male preponderance (60.7%). Febrile seizures were the most common cause of acute seizures. The presence of fever or focal seizure was independently associated with the development of status epilepticus. Children with meningitis and status epilepticus were more likely to die, therefore it is very important to prevent and treat meningitis and seizures.
p17 Ivermectin treatment in persons with onchocerciasis-associated epilepsy: a randomized 4 month proof of concept clinical trial
Michel Mandro Ndahura1, Robert (Bob) Colebunders2
1Division of Health of Ituri Province, Bunia, Congo, Dem. Rep. of; 2Global Health Institute, University of Antwerp, Antwerp, Belgium
Purpose: Both existing literature and anecdotal evidence suggest that ivermectin (IVM) may be beneficial in the prevention and treatment of onchocerciasis-associated epilepsy (OAE). To evaluate the short-term effects of IVM on seizure frequency in onchocerciasis-infected persons with epilepsy (PWE), a proof-of-concept randomized clinical trial was conducted.
Method: In October 2017, eligible PWE from the Logo health zone (Democratic Republic of Congo) were recruited and randomly assigned to “immediate IVM treatment” (arm A) or “4 months delayed IVM treatment” (arm B). All participants also received phenobarbital. The adjusted effects of immediate IVM on seizure frequency in PWE were estimated using logistic regression.
Results: The 91 participants (median age: 20 years [IQR: 16-27]) were allocated to Arm A (n = 45) and arm B (n = 46). By March 2018, 90 (99%) PWE had completed their month 4 evaluation. Arm A had higher odds of attaining seizure freedom at month 4, compared to Arm B (OR: 1.88; 95% CI: 1.03–3.40; p=0.038). In addition, PWE in arm A had a higher probability of achieving >50% seizure reduction (OR: 4.62; 95% CI: 1.15–18.62; p=0.031). Subgroup analyses excluding participants whose phenobarbital dose had been increased by 30mg or more during follow-up, did not alter these findings.
Conclusion: IVM had a marginal significant impact on the probability of being seizure-free. The point estimate for the probability of reducing >50% seizures at month 4 was imprecise given the wide confidence interval. Larger and longer studies are needed to confirm the benefits of IVM in OAE.
p18 Ictal Epileptic Headaches: a case series
Chokote Tolo1, Temgoua Michael2, Godwin Tatah3, Djegoue Paulette4, Balla Alain2, Leonard Ngarka5, Nfor Leonard5, Alfred Njamnshi5
1Jordan Medical Services and Brain Research Africa Initiative, Yaoundé, Cameroon; 2Jordan Medical Services, Yaoundé, Cameroon; 3CH Saint Nazaire; Brain Researche Africa Initiative, Central Hospital Yaoundé, Saint Nazaire, France; 4Regional Hospital Maroua, Maroua, Cameroon; 5Brain Researche Africa Initiative; Central Hospital Yaoundé, Yaoundé, Cameroon
Purpose: Headaches are often associated with seizures mostly post-ictally. Rarely, ictal headaches occur as the sole or predominant manifestation of seizures and can be misdiagnosed.
Method: We report 3 cases, highlighting the clinical presentation, diagnosis and management.
Results: Case 1: 20-year old male with no contributive past history presented a one-week history of diffuse intense headache episodes, each lasting three minutes with preserved awareness. Episode frequency was three a day, associated with agitation. Brain CT, CSF analysis, metabolic and toxicologic screening were negative. EEG revealed generalized IEDs. Symptoms regressed on valproic acid (750mg).
Case 2: 31-year old male reported 10-minute episodes beginning with palpitations, headaches and sweating with no alteraton of awareness evolving for a month. Negative urine metanephrines and normal abdominal ultrasound ruled out pheochromocytoma. EEG revealed focal IEDs suggesting right frontal lobe epilepsy. Symptoms regressed on Carbamazepine (600mg).
Case 3: 16-year old boy with ADHD described 10 days of severe daily headaches lasting 2 minutes, associated with clonic movements of the left arm with preserved consiousness. Brain CT, infectious and metabolic tests were unremarkable. EEG showed right frontal lobe intermittent slowing. Symptoms disappeared on carbamazepine (400mg).
Conclusion: All patients were young males. Headaches were paroxystic, severe and did not meet IHDS criteria for any primary or secondary headaches. Electro-clinical syndromes were diverse and symptoms completely regressed on AEDs.
Ictal headaches should be considered in the presence of paroxystic intense non specific headaches. The spectrum of epileptic syndromes involved is very wide.
p19 Non-adherence to antiepileptic drugs and related factors in epileptic patients at Douala Laquintinie Hospital
Franck Remy Tachom Waffo1, Callixte Kuate Tegueu2, Jacques Doumbe3
1Higher Institute of Health Sciences, University of Mountains, Bangangte, Cameroon; 2Faculty of Medicine and Biomedical Sciences, University of Yaounde 1, Yaounde, Cameroon; 3Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Douala, Cameroon
Purpose: The purpose of this study was to determine the prevalence and associated factors of non-adherence to antiepileptic drugs in a referral hospital in the city of Douala, Cameroon.
Method: A cross-sectional study was carried out on 102 selected individuals who fulfilled the inclusion criteria and gave their consent. Non-adherence to antiepileptic drugs was measured by the 8-item Morisky Drug Adherence Scale (MMAS) and logistic regression was used to search for significant associations.
Results: Of a total of 102 patients studied, 82.35% (84) were non-adherent with regards to AEDs. The reasons for non-adherence were forgetfulness (P <0.00001), lack of financial resources in 45.45% of patients (P < 0,00001), not having medication on hand, and shortage of drugs at the pharmacy (11.36%) (P < 0,00001)and lack of information on the disease in 22.73% of patients(P < 0,00001).
Conclusion: The non-adherence to AEDs is common in Cameroon. Targeted management programs and communication strategies as well as health workers training are necessary to improve adherence to AED treatments in patients with epilepsy and avoid consequences of non-adherence, such as seizure recurrence and poor quality of life.
p20 Prevalence, incidence and risk factors for epilepsy in North-West Cameroon
Samuel Angwafor1, Alfred K. Njamnshi2, Gail Bell3, Josemir W. Sander3
1Neurology Department, Bamenda Regional Hospital, Bamenda, Cameroon; 2Neurology Department University of Yaoundé 1, Yaoundé, Cameroon; 3UCL Queen Square Institute of Neurology, London, United Kingdom
Purpose: The aim of this study was to ascertain the prevalence and risk factors for epilepsy in the Batibo Health District in North-West Region of Cameroon were epilepsy is believed to be common yet has not been previously studied.
Method: During door-to door visits, fieldworkers used a structured questionnaire to interview consenting heads of households about the possibility of epilepsy in eligible residents of the house. All people with suspected epilepsy were subsequently assessed by a physician who confirmed or refuted the epilepsy diagnosis. People with epilepsy and randomly selected healthy subjects were interviewed by a nurse who obtained information on exposure to risk factors for epilepsy. A total of 39,527 permanent residents were screened.
Results: The age-standardised prevalence of active epilepsy was 3.5% (95% CI: 3.2-3.9). The prevalence of active epilepsy varied widely between health areas, ranging between 1.2% and 7.7%. The peak age-specific prevalence was in the 20-29 age group. Epilepsy was focal in 59% of people, and the median age at first seizure was 11 years (Interquartile range: 8-15). About 81% of people with epilepsy were either untreated or receiving inappropriate treatment. Family history of epilepsy was the main factor associated with epilepsy after multivariate analysis (OR: 6.8; 95% CI: 3.2-14.1).
Conclusion: In conclusion, the characteristics of active epilepsy in this Cameroonian population, mainly the geographical heterogeneity and the pattern of the age-specific prevalence, suggest that parasites, mainly cysticercosis and onchocerciasis may be involved. Robust prospective studies are needed to clarify the risk factors for epilepsy in this population.
p21 Onchocerciasis elimination drastically reduces epilepsy prevalence and incidence in Kabarole, Western Uganda
Nolbert Gumisiriza1, Christoph Kaiser2, George Asaba3, Henry Onen4, Frank Mubiru4, Donozio Kisembo3, Joseph-Nelson Siewe Fodjo5, Robert Colebunders5
1Busitema University, Mbale, Uganda; 2Practice for Child and Adolescent Health, Baden-Baden, Germany; 3Basic Health services Kabarole and Bundibugyo districts, Fort Portal, Uganda; 4Infectious Disease Institute, Makerere University, Kampala, Uganda; 5Global Health Institute, University of Antwerp, Antwerp, Belgium
Purpose: In 1994, high rates of epilepsy prevalence and incidence were found in the Itwara onchocerciasis focus (western Uganda), where transmission was successfully interrupted in 2001. Seventeen years later, we investigated the effect of onchocerciasis elimination on epilepsy burden in this area.
Method: In December 2018, a follow-up door-to-door epilepsy survey was conducted in the three villages with the highest epilepsy rates in 1994. The prevalence and incidence of epilepsy, as well as the proportion of persons with epilepsy (PWE) meeting pre-defined criteria of onchocerciasis-associated epilepsy (OAE) were determined in three villages (Kabende Centre, Masongora South, and Rwesenene). Results of 2018 were compared with those of 1994.
Results: Overall crude prevalence of epilepsy in the study villages decreased from 3.0% (35/1,169) in 1994 to 1.2% (27/2,325) in 2018 (p=0.0002), while incidence dropped from 418 to 73 new cases per 100,000 person-years (p<0.0001). The age-specific epilepsy prevalence in the 10–19 year old decreased from 8.3% to 1.0% (p<0.0001). Among the PWE with seizure onset within the five years preceding each survey, 16/23 (69.6%) fulfilled the OAE in 1994 compared to only 1/8 (12.5%) in 2018; p=0.0109). One person presented with Nakalanga features and another with seizures consistent with nodding syndrome, none of whom were younger than 25 years.
Conclusion: This study demonstrates that onchocerciasis elimination of onchocerciasis reduces the epilepsy burden in hyper-endemic areas, and provides additional evidence that onchocerciasis can cause epilepsy. Therefore, onchocerciasis control should be intensified in endemic regions with a high prevalence of epilepsy.
p22 Prevalence and incidence of Nodding Syndrome and other forms of epilepsy in onchocerciasis endemic areas in northern Uganda, after the implementation of onchocerciasis control measures
Nolbert Gumisiriza1, Frank Mubiru2, Martin Mbonye3, An Hotterbeekx4, Thomas Lakwo5, Richard Idro6, Joseph Nelson Siewe Fodjo4, Robert Colebunders4
1Busitema University, Kampala, Uganda; 2Infectious Disease Institute, Makerere University, Kampala, Uganda; 3School of Statistics, Makerere University, Kampala, Uganda; 4Global Health Institute, University of Antwerp, Antwerp, Belgium; 5Ministry of Health, Kampala, Uganda; 6College of Health Sciences, Makerere University, Kampala, Uganda
Purpose: To evaluate the effect of community-directed treatment with Ivermectin (CDTI) and ground larviciding of rivers, on the incidence of Nodding syndrome (NS) and other forms of epilepsy (OFE) in the districts of Kitgum and Pader in northern Uganda.
Method: In 2012, the Ugandan Ministry of Health carried out a district wide NS/epilepsy survey in Kitgum, Pader and Lamwo. In August 2017, a new survey was conducted in selected villages of Kitgum and Pader. 2012 and 2017 prevalence and incidence of NS and OFE in selected villages in Kitgum and Pader were compared.
Results: Between 2012 and 2017, the overall (Kitgum & Pader) prevalence of NS reduced from 4.9% to 4.6% (p=0.740), while that of OFE dropped from 7.7% to 5.1% (p=0.016). The number of new NS cases per year dropped from four in 2012 to zero in 2017, with overall decrease in the cumulative incidence of NS and OFE (p=0.029). In 2017, the median age of affected persons shifted from 13 to 17 years for NS (p<0.001), and from 14 to 20 years for OFE (p<0.001).
Conclusion: This study illustrates that in the absence of onchocerciasis elimination measures, Nodding Syndrome and other forms of epilepsy can become a major public health problem in onchocerciasis-endemic areas. A combination of semi-annual mass distribution of ivermectin and ground larviciding of rivers is an effective strategy in reducing prevalence and incidence of NS and OFE in onchocerciasis-hyperendemic areas.
p23 Confirmation of the high prevalence of epilepsy in Rwanda: a door-to-door survey in three villages in the Musanze district (Northern Rwanda)
Fidele Sebera1, Frank Van Steenkiste2, Sylvestre Mutungirehe1, Dirk Teuwen3, Peter Dedeken4, Paul Boon5
1CARAES Neuropsychiatric Hospital, Kigali, Rwanda; 2Psychiatric Center, Sint-Jan-Baptist, Zelzate, Belgium; 3UCB Pharma, Brussels, Belgium; 4Heilig Hart Hospital, Lier, Belgium; 5Ghent University Hospital, Ghent, Belgium
Purpose: High prevalence (49؉) of epilepsy in Rwanda was reported in a study from 2005. We aimed to verify these data by conducting a door-to-door survey in three villages in Northern Rwanda.
Method: In September–October 2017, trained healthcare workers administered the 5-item Limoges epilepsy screening questionnaire in three villages in Northern Rwanda. Cases responding positive to at least one question were examined by a Rwandan physician with four-year experience in neurology and a final-year resident neurology from Ghent University in Belgium for confirmation of the epilepsy diagnosis.
Results: A total of 2,681 individuals were screened in 830 households and 172 individuals (6.4%) responded positive to at least one question. A total of 128 cases (76.2%) were clinically confirmed with epilepsy, resulting in an overall epilepsy prevalence of 47.7؉ (36.2, 63.4 and 48.8؉ in Kaberege, Mwidagaduro and Rutemba village, respectively). Nineteen cases were previously diagnosed with epilepsy, 109 were newly diagnosed. 60% (77/128) were female and the mean age was 28.5 years. The mean time between first recalled seizure and diagnosis was 8.3 years (range 2 weeks to 67 years). The treatment gap was 88.3%, with only 11 of 19 previously diagnosed receiving AED treatment. Nearly one in five persons with epilepsy (25/128, 19.5%) did not have health insurance coverage.
Conclusion: This study confirms the high epilepsy prevalence in Rwanda, and demonstrates a considerable treatment gap. Many individuals with epilepsy do not have access to medical care. Combined efforts of different stakeholders are required to ease the epilepsy burden.
Study supported by: UCB Pharma
p24 Mortality of all causes and possible SUDEP in a cohort of patients with epilepsy in Rwanda using WHO verbal autopsy reports
Beni Uwacu1, Fidele Sebera2, Josiane Umwiringirwa1, Dirk Teuwen3, Peter Dedeken3, Paul Boon4
1CARAES Neuropsychiatric Hospital, Kigali, Rwanda; 2Centre Hospitalier Universitaire Kigali (CHUK), Kigali, Rwanda; 3UCB Pharma, Brussels, Belgium; 4Ghent University Hospital, Ghent, Belgium
Purpose: Mortality in Patients with Epilepsy (PwE) is 1.6–9.3 times higher compared to general population. 40% of deaths in PwE are related to the underlying disorder, sudden unexpected death in epilepsy (SUDEP), seizure trauma, status epilepticus, suicide or treatment. Mortality from definite/probable SUDEP has been estimated at 0.35 cases per 1,000 person-years. We assessed causes of death in PwE in a Rwandan cohort.
Method: PwE presenting for the first time between Jan-June 2016 at a tertiary epilepsy center, were prospectively followed-up. Home visits were conducted if patients were lost to follow-up at 19 months. A multidisciplinary team including a neurologist, interviewed family/caregivers using World Health Organization Verbal Autopsy Standards age-specific questionnaires.
Results: Of 235 PwE, 81 (34.4%) were lost to follow-up. We identified 7 fatalities (mortality 1.88 per 100 person-years, CI 0.82-3.72). The age varied between 2 and 78 years. Four deaths were attributed to an identified cause: brain tumor, metastatic liver cancer, head trauma secondary to seizures, and hypovolemic shock. Three deaths lacking autopsies were possible SUDEP, having occurred in patients receiving AEDs aged 2, 21, and 34 years. In two cases, death occurred during sleep and none showed any symptoms of other illness. The possible SUDEP rate is 8 per 1000 person-years, CI 2.05-21.94.
Conclusion: Although post-mortem autopsies were missing and our study was not designed as a mortality study, the high mortality and possibly high SUDEP rates in this cohort warrant future studies to establish the causes of epilepsy-related deaths in Rwanda.
p25 Nationwide Epilepsy Prevalence in Uganda: Preliminary Results
Angelina Kakooza1, Anthony Fuller2, Frederick Makumbi1, Simon Kibira1, Christine Muhumuza1, Deborah Koltai2, Dirk Teuwen3, Michael Haglund2
1Makerere University, Kampala, Uganda; 2Duke University, Durham, USA; 3UCB, Brussels, Belgium
Purpose: In this study we aimed to estimate the nationwide prevalence of epilepsy in Uganda and to describe the geographic variations.
Method: The Uganda Bureau of Statistics identified 330 enumerations areas (EA) across Uganda. In each EA, 30 households were randomly selected for participation. Every member of the household was eligible to participate in this survey, which had a two-tiered epilepsy screen, demographics, and sections on sociocultural variables and health care utilization. Tier I of the two-part prevalence screen consisted of 10 validated questions from prior prevalence studies. Participants with a positive Tier I screen completed Tier II, which consisted of 3-questions designed to increase epilepsy specificity by eliminating positive Tier I cases explained by other factors.
Results: A total of 8819 households participated in this study with 35055 individual responses. Tier I yielded 2284 positive screens (6.52% prevalence estimate). Tier II narrowed this sample to 732 (2.09% prevalence estimate). Geographically, there were major regional differences in epilepsy prevalence (based on Tier II) with some estimates as high as 10.1%. Gender, age, and other demographic variables provided similar patterns.
Conclusion: Prevalence estimates of epilepsy fluctuate geographically across Uganda probably as a result of varying risk factors. Establishing the geographic distribution and identifying these risk factors can inform future efforts to strategically improve epilepsy care in Uganda. Efforts are underway to perform a Tier III examination-based validation by neurologists on the participants who screened positive at Tier I or Tier II, to confirm the diagnosis of epilepsy and to initiate treatment.
p26 Epilepsy and PNES as a consequence of political violence in the East Africa Region: two respective case reports
Jamila Nambafu1, Larry Mburu1, Béni Hubert2, Dilraj Sokhi1
1Aga Khan University Medical College of East Africa, Nairobi, Kenya; 2Legacy Clinics, Kigali, Rwanda
Purpose: Mesial temporal sclerosis (MTS) can be caused by perinatal insults or head injury, and causes epilepsy. Psychogenic non-epileptic seizures (PNES) are usually precipitated by biopsychosocial factors; there is paucity of published data on PNES and associated risk factors from sub-Saharan Africa.
Method: We describe two cases, of MTS and PNES, both linked to regional political violence.
Results: Case 1: a 26 year-old man from Kigali with blackouts for 2 years, with witnessed semiology in keeping with focal-onset dyscognitive seizures and secondary generalisation. MRI brain confirmed left MTS, the only risk factor being a significant head injury during the 1994 genocide. His seizures became well controlled on Lamotrigine and Levetiracetam.
Case 2: a 28 year-old primigravid nurse with acute-onset head and limb shaking with loss of consciousness after using a nasal spray. The admitting centre could not control the presumed seizures with anti-epileptic medication so was transferred to our centre. She had waxing-waning limb tremors with side-to-side headshaking, eyes closed and seemingly unresponsive for several minutes; ictal electroencephalography (EEG) with suggestion was normal, confirming PNES which was explained to the proband. She confessed to having suppressed significant emotional trauma experienced during the 2007 post-election violence in Kenya that affected her whole family. She perceived this first pregnancy would threaten her ongoing responsibility to looking after her siblings. Her attacks completely resolved after three sessions of psychodynamic psychotherapy.
Conclusion: Historic traumatic life events can be due to political violence, which in turn can have a significant role in the genesis of epilepsy and PNES.
p27 Evaluation of the neuroinflammation and neurodegeneration during schistosomiasis chronic infection in mice
Ulrich Femoe Membe
Faculty of Science of the University of Yaoundé I, Yaoundé, Cameroon
Purpose: Schistosomiasis, a parasitic disease caused by parasite of the genus Schistosoma affects at least 206.4 million of people worldwide and 91.4 % in Africa. The eggs released by the adult female worm are mainly responsible to the pathology when they are deposited in tissues. The most severe clinical outcome associated with this parasite is the infection of the CNS known as neuroschistosomiasis. Eggs are embolized in the CNS where the embryo secretes immunogenic and lytic substances which induced a granulomatous inflammatory reaction and neurodegeneration. Many clinical cases have been reported but no experimental study performed to understand the neuropathology occurred after CNS invasion by Schistosoma eggs. Thus, this study will aim to determine neuropathy induced by CNS invasion by S. mansoni eggs on neurobehavior in mouse.
Method: Seven mice (60 days aged) will be with S. mansoni cercariae. Seven healthy mice will be used as control. Daily food and water intake will be monitored. After 90 days post-infection (p.i), each mouse will be submitted twice to open field, rotarod performances, forced swim, elevated plus maze tests to evaluate their locomotory and motricity activities as well as their anxiety level. At 120th day p.i mice will be euthanized. A part of the brain will be used to evaluate the glucose level and oxidative stress status. The other portion will be fixed in formalin for histopathological and immunohistochemical analysis to evaluate neuroinflammation and neurodegeneration by assaying and quantifying the GFAP and Neurofilament protein on the brain parenchyma.
Results: Not available yet
Conclusion: Not available yet
p28 Electrographic Features Among Children With Nodding Syndrome, Asymptomatic Siblings and Unrelated Healthy Controls
Rajarshi Mazumder1, Kenneth Tabu2, Jerome Engel, Jr1, David Kitara Lagoro2, Peter Spencer3, Sam Olum2, Dawn Eliashiv1
1University of California, Los Angeles, USA; 2Gulu University, Gulu, Uganda; 3Oregon Health & Science University, Portland, USA
Purpose: Nodding syndrome (NS) is a childhood-onset epileptic encephalopathy of unknown etiology endemic to eastern Africa. NS cases often cluster within families and multiple siblings are usually affected. This study compares the electrographic features among children with NS, their asymptomatic siblings and unrelated healthy controls from the same community.
Method: Twenty triads of children with NS, their clinically normal younger siblings and age- and gender-matched unrelated healthy controls underwent extended video-EEG using a portable system. EEGs were qualitatively reviewed blind by two board-certified epileptologists.
Results: Children with NS were aged 12-18 (mean 16) years. The younger asymptomatic siblings and the unrelated community controls were aged 7-14 (mean 10) years. Among children with NS, interictal EEG frequently showed 2-Hz generalized spike-and-wave discharges and a slow (delta-theta range) background. Ictal EEG time-locked to the head-nodding episodes, which always occurred in clusters, showed sharp-and-slow wave complexes followed by superimposed generalized fast activity. Two (10%) asymptomatic siblings and one (5%) unrelated community control subject also had abnormal interictal epileptiform abnormalities.
Conclusion: The electrographic ictal findings of high amplitude slow waves with superimposed fast activity show that NS is a novel epileptic encephalopathy with unique ictal features. The presence of a higher burden of EEG abnormalities among asymptomatic siblings and unrelated community controls needs to be investigated in further longitudinal studies and assess if some may develop NS in the future. The abnormal electrographic traits seen among clinically healthy individuals offers an opportunity for development of potential biomarkers for early detection and treatment of NS.
p29 Epilepsy or not epilepsy that is the question
Moses Kibuuka, Vasiliki Tsirka
Barts Health NHS Trust, The Royal London Hospital, London, United Kingdom
Purpose: To evaluate the semiology of epileptic seizures and EEG characteristics that can guide correct diagnosis.
Method: Retrospective review of Scalp Video Telemetry recordings of patients admitted to the Epilepsy Monitoring Unit at the Royal London Hospital for assessment, confirmation , classification , treatment and management of their epilepsy
Results: 114 patients monitored for at least 5-7days. 76 adults and 38 paediatrics. 44% of the total were found to have non epileptic attacks. 26% were confirmed to have epileptic seizures and the remaining 30% were inconclusive or no typical events were captured.
Conclusion: Comprehensive Long term Video Telemetry monitoring is vital to confirm whether a patient has epileptic seizures and to further refine the type of epilepsy to allow effective management and exploring all treatment options.
p30 The use of EEG for the diagnosis and management of epilepsy in developing countries.
Moses Kibuuka, Raksha Chauhan, Vasiliki Tsirka
Barts Health NHS trust, London, United Kingdom
Purpose: The evaluation of patients with epilepsy may prove difficult without an electroencephalogram (EEG). In the majority of cases the clinical diagnosis is concordant ith the EEG findings
Selective EEG investigations may be the way forward for correct epilepsy diagnosis and classification in the developing country
The EEG is one of the most important diagnostic tools to assess epilepsy. It is a harmless test and fairly inexpensive in a developed world. In developing countries, the test is still expensive and not easily accessible. Selective EEG investigations may be the way forward for accurate epilepsy diagnosis and classification in a developing country
We revisit the uses and abuses of EEG in epilepsy, mainly in the developed world to establish the value of EEG for the confirmation of various epilepsy syndromes. We propose EEG protocols (Video EEG monitoring), specifically tailored for individual patient cases. These aim to obtain precise and adequate electrophysiological and clinical information in order to reach accurate epilepsy diagnosis, including syndromic classification and guide the most appropriate treatment options.
p31 Combined focal and generalized electrographic abnormalities in onchocerciasis associated epilepsy: taxonomic implications under the new 2017 ILAE classification
Rajarshi Mazumder1, Jean-Marie Kashama2, Beatrice Bora Koba3, Daniel Okitundu Luwa2, Jerome Engel, Jr1, Desire Tshala-Katumbay4, Dieudonne Mumba Ngoyi2, Franck Kalume5
1University of California, Los Angeles, USA; 2University of Kinshasa, Kinshasa, Congo, Dem. Rep. of; 3University of Lubumbashi, Lubumbashi, Congo, Dem. Rep. of; 4Oregon Health & Science University, Portland, USA; 5University of Washington, Seattle, USA
Purpose: We searched for electrographic signatures of Onchocerciasis (OC)-associated epilepsy in OC endemic areas.
Method: The study included 82 participants with epilepsy (PWE) with mean age of 23.6 (SD: 8.4) years and 29 without epilepsy (PWOE) with mean age of 19 (SD: 7.2) years. OC infection was confirmed by skin snip biopsies. Routine electroencephalogram (EEG) were performed on all participants.
Results: 66 of 82 PWE and 16 of 29 PWOE tested positive for OC infection, respectively (age and gender adjusted OR= 2.95, 95% CI: 1.12-7.74, p=0.009). Overall, 35 of 82 PWE (42.6%) and 2 of 29 (6.9%) PWOE had interictal EEG abnormalities. Bi-frontally predominant generalized spike-and-wave discharges was the most common interictal EEG abnormalities seen among 12 of 82 (14.6%) OC-infected individuals, 11 of whom were PWE and 1 PWOE.
Focal epileptiform abnormalities and generalized epileptiform or diffuse abnormalities of the EEG background were seen in 15 and 14 of the 66 OC-infected PWE, respectively. Six of 16 PWE but without OC also had focal (6%) and generalized (13.7%) electrographic abnormalities. While all PWOE without OC infection had normal EEG, 2 of the 16 PWOE but with OC infection had generalized epileptiform abnormalities.
Conclusion: OC-infected PWE have both focal and generalized interictal electrographic abnormalities, suggesting that OC-associated epilepsy could be classified as a combined generalized and focal epilepsy syndrome under the new 2017 ILAE classification. Further studies are needed to determine the pathogenetic relevance of EEG abnormalities in PWOE but infected with OC in OC endemic areas.
p32 Epileptic spasms at Muhimbili National Hospital, Dar Es Salaam Tanzania, a retrospective study
Muhimbili University Of Health And Allied Sciences, Dar Es Salaam, Tanzania
Purpose: To describe the clinical presentation, management and outcome of patients with Epileptic Spasms attending Muhimbili National Hospital (MNH), Dar Es Salaam Tanzania.
Method: A retrospective cross sectional study of all patients diagnosed with epileptic spasms was conducted at MNH from July 2016 to October 2018.
Results: A total of 40 patients diagnosed with epileptic spasms were retrieved with male to female ratio of 3:2 and the age group ranged from 1 month to 5 years. In this study, 17 (42.5%) patients had a documented history of perinatal insult.
The median age of onset of spasms was 5 months (IQR 1-12 months). Twenty-six (65%) had developmental delay before the onset of spasms and 6(55%) out of 11 who had normal milestones before onset of symptoms, their developmental milestones returned to normal after treatment. In 14 (80%) out of 17 patients whom EEG findings were retrieved had abnormal EEG findings showing either generalized epileptiform discharges 7(41%), generalized slowing 5(30%), hypsarrthymia 1(6%), or abnormal focal epileptiform discharges 2 (12%).
At the time of presentation at MNH, 35(85%) of patients were on medication which included sodium valproate, carbamazepine and phernobabitone. Twenty-nine (73%) received prednisolone with a median time of spasms subsiding of 1month from 10 days to 3 months in about 90% of patients.
Conclusion: The median age of onset of epileptic spasms at MNH is 5 months with most common cause being perinatal insult in more than 40%. Most of patients showed a good response to a high dose Prednisolone.
p33 Clinical characteristics of childhood epilepsy at the CARAES Neuropsychiatric Hospital, Ndera (Kigali, Rwanda)
Francois Nshimiyimana1, Fidele Sebera1, Josiane Umwiringirwa2, Delphine Kajeneza2, Arlene Ndayisenga2, Sylvestre Mutungirehe2, Dirk Teuwen3, Peter Dedeken3
1Centre Hospitalier Universitaire Kigali (CHUK), Kigali, Rwanda; 2CARAES Neuropsychiatric Hospital, Kigali, Rwanda; 3UCB Pharma, Brussels, Belgium
Purpose: Epilepsy in children has a significant impact on child development, parents, and society. Understanding its clinical characteristics and impact on disability is of great importance for informing policy-makers. This study addresses the knowledge gap of pediatric epilepsy in Rwanda among children with epilepsy (CwE).
Method: This cross-sectional, observational study was conducted over 1 week in September 2018 at the CARAES Neuropsychiatric Hospital, a tertiary reference centre in Ndera. A Belgian pediatric neurologist and three Rwandan physicians experienced in epilepsy, documented epilepsy characteristics based on medical history, clinical exam, and medical record review. The 12-question WHO Disability Assessment Schedule (WHODAS) was also administered to patients or their parents/guardians.
Results: 74 CwE were included, 54% male, mean age 8.8y (range 1–19.7y). EEG and imaging (CT/MRI) were available in 93% and 12%, respectively. Seizures were classified as focal-onset in 39% and generalized-onset in 58%. The probable etiology was hypoxic-ischemic in 25%, yet unknown in 67.5%. 97% of CwE were on AED treatment, 42% on monotherapy, resulting in 6 month seizure freedom in 50% of CwE. Intellectual disability was present in 50%. WHODAS resulted in many missing values in CwE aged <12y and showed that disability affected mostly learning, concentration, and daily activities at school, on average more than 10 days/month.
Conclusion: Despite achieving 6-month seizure freedom in 50% of CwE, epilepsy-related disability has a major impact on daily activities. Also, limited availability of proper diagnostic resources hinders etiological and seizure classification. Improved tools for assessment of disability in CwE are needed.
p34 Impact of perinatal abnormalities in the occurrence of epilepsy in infant
Kegnide Christelle Affognon1, Marcellin Baguma Bugeme2, Daniel Gams Massi3
1Cheikh Anta Diop University/Fann Teaching Hospital/ Neurosciences Clinical, Dakar, Senegal; 2Cheikh Anta Diop University/Fann Teaching Hospital, Dakar, Senegal; 3Faculty of medicine and pharmaceutical sciences of the university of Douala, Douala, Cameroon
Purpose: The aim of this study was to evaluate the impact of perinatal disorders on the occurrence of epilepsy in infants.
Method: Retrospective descriptive and analytical study was conducted from February 2003 to August 2013, involving 283 epileptic infants aged 1 to 30 months followed for at least 1 year in a neuropediatric consultation in the department of neurosciences of Dakar
Results: The mean age of our patients was 17 months. 188 patients (66%) were male. The mean age of onset of seizures was 8 months. Perinatal disorders were found in 150 (53%) infants: 37% of abnormalities of pregnancy and childbirth, 3% of maternal diseases and 13% of childhood diseases. Maternal diseases were dominated by high blood pressure (1%) and diabetes (1%), and abnormalities in pregnancy included toxoplasmosis and rubella (1%), twins (2.69%), and delivery: neonatal asphyxia (20.26%), prematurity (2.13%) and neonatal seizures (5.33%). Infantile disorders were dominated by infectious diseases (meningitis, malaria neurological form) in 5.57%.
Conclusion: Epilepsy remains common among infants in our contexts. The main perinatal factors found are disease during pregnancy and neonatal period. An improvement of the gyneco-obstetrical conditions, would contribute to reduce the frequency of these chronic disease.
p35 Behavioral disorders in patients with epilepsy: experience of National Psychiatric Hospital Thiaroye
Fatoumata Ba1, El Hadji Makhtar Ba2
1University Gaston Berger, Saint-Louis, Senegal; 2University Cheikh Anta Diop, Dakar, Senegal
Purpose: Behavioral disorders are very common in patients with epilepsy compared to the general population. Psychiatric symptomatology may be predominant and obscure the diagnosis of epilepsy, especially since these patients are often referred to psychiatric services.
The objective of this work is to show that in the face of any paroxysmal behavior disorder, epilepsy must be considered and the necessary investigations made.
Method: We report two clinical observations of unrecognized patients with epilepsy.
Results: These two young female patients presented paroxysmal behavioral disorders like aggression, psychomotor instability, hallucinations, dangerous acts such as jumping under the train or jumping from the balcony. The sleep / awake electroencephalography performed confirmed the epileptic origin of the disorders. The evolution was good under antiepileptic treatment.
Conclusion: The comorbidity psychosis epilepsy poses diagnostic and therapeutic problems. Better collaboration between neurologists and psychiatrists is needed to improve the care of these patients.
p36 Prevalence and factors associated with suicidal behavior among adolescents with epilepsy at Butabika and Mulago National Referral Hospitals
Hillary Kuteesa1, Cathy Abbo2, Winstons Muhwezi2
1Butabika National Referral Mental Hospital, Kampala, Uganda; 2Makerere University, Kampala, Uganda
Purpose: This study aimed to determine the prevalence and factors associated with suicidal behavior among adolescents with epilepsy at Butabika and Mulago Hospitals.
Method: Using a cross sectional study design, we sampled 223 adolescents and used a Demographics Questionnaire, MINI-KID, Brief-COPE, and the MSPSS instruments to collect the data. Data Entry was done with Epi Data and analysis with Stata 14. Our dependent variable was suicidal behavior and the independent variables were socio-demographic characteristics of adolescents and caregivers, epilepsy related factors, psychiatric co morbidity, coping strategies and perceived social support. Univariate, bi-variate and multi-variate analyses were done.
Results: Of the 223 adolescents, (123)55.2% were male, 52.9% were aged 14-17 years. The prevalence of suicidal behavior was 30.5%. Major depression was most strongly associated with suicidal behavior (aOR=9.3, CI=4.3-20.1, p<0.001). Adolescents having post primary education were more likely to have suicidal behavior (aOR=2.2, CI=1.0-4.9, p=0.046). Venting as a coping strategy was also found to increase the likelihood of having suicidal behavior (aOR=2.7, CI=1.2-6.2, p=0.017) whereas perceived family social support (aOR=0.4, CI=0.2-0.8, p=0.017) and the use of the active coping strategy (aOR=0.4, CI=0.2-0.9, p=0.033) were protective against suicidal behavior.
Conclusion: The prevalence of suicidal behavior in adolescents with epilepsy was high. Major depression increased the likelihood of suicidal behavior the most while perceived family social support and using the active coping strategy were protective against suicidal behavior.
p37 Prevalence and factors associated to anxiety in epileptics in Douala, Cameroon
Callixte Kuate Tegueu1, Franck Tachom-Wafo2, Jacques Doumbe3, Aline Motuom-Fotso4
1Douala Laquintinie Hospital, Douala, Cameroon; 2Institut Supérieur des Sciences de la Santé Université des Montagnes, Bangangté, Cameroon; 3Faculty of Medicine and Pharmaceutical, The University of Douala, Douala, Cameroon; 4Neurology Department, Douala Laquintinie Hospital, Douala, Cameroon
Purpose: The present study was designed to investigate the association of interictal anxiety with various demographic and seizure-related variables in patients with epilepsy in a referal Hospital in Douala, Cameroon
Method: A cross-sectional study was realised at the Neurology Department of the Douala Laquintinie Hospital, one of the referal hospital in the economic capital of Cameroon. Anxiety was assessed in the interictal state using the Hospital Anxiety and Depression Sccale (HADS). The association of anxiety with various variables was investigated using simple linear regression analyses.
Results: Were recruited 102 patients with epilepsy (54,9% male, mean age 28,38±19,74 years). Out of them, 13 had HADS score > 11 giving 12,75% prevalence of anxiety disorders. Factors associated with anxiety in epileptics were duration of epilepsy longer than 15 years and the stigma.
Conclusion: Our results confirm the prevailing view that anxiety are common psychological disorders in epileptics. Longer duration of epilepsy and the associated stigma are independent risk factors for the development of anxiety.
p38 The relationship between Epilepsy and Autism
Kenyatta National Hospital, Nairobi, Kenya
Purpose: The relationship between Autism Spectrum Disorder and Epilepsy
Method: Clinical Presentation
Results: 15 percent of people with epilepsy have autism traits such as impaired social interactions, communication impairments. Some researchers believe that epilepsy medication might ease some symptoms of Autism and Persons with Epilepsy (PWE) can benefit from autism therapies that focus on improving socialization skills. Studies have showed that epileptic seizures short-circuit the neurological function in the brain that affects socialization and involves the same traits as seen in autism – impairment of normal social interaction (eye contact, conversation, enjoying the act of sharing with someone else) and tightly regimented or repetitive cycles of behavior.
Conclusion: Epilepsy coexist together with autism.Seizures and epilepsy are very prevalent in patients with autism spectrum disorder
p39 Nodding syndrome in northern Uganda: An ecology of care approach
Makoto Nishi1, Kikuko Sakai2, Yasuaki Sato3, Kato Stonewall4, Kazuhiko Moji5
1Kyoto University, Kyoto, Japan; 2Kanazawa Seiryo University, Kanazawa, Japan; 3Osaka Sangyo University, Osaka, Japan; 4Gulu University, Gulu, Uganda; 5Nagasaki University, Nagasaki, Japan
Purpose: Nodding syndrome (NS) is a form of epilepsy that affects previously healthy children, causing frequent seizures and a decline in cognitive and motor functions. Previous studies indicate that the epidemic of NS was triggered by a string of events that rendered the local Acholi population more susceptible to underlying environmental factors. We recently launched a research project with the aim of understanding the problems NS patients and their families face through a set of contextual inquiries, which we refer to as the ecology of care: a transdisciplinary framework for understanding the knowledge, resources, and connections that determine the quality of life of persons in a particular milieu.
Method: We are conducting household surveys, interviews, and participatory observations in selected villages in Gulu district, northern Uganda.
Results: NS affects the household economy in several ways, including loss of family time because of patient care and reduced ability of the patient to contribute to household work. Furthermore, as many NS patients reach the age of adolescence and adulthood, issues concerning their social integration, including work and marriage, have become crucial.
Conclusion: It is increasingly evident that the epidemic is a health event that is embedded in the local social settings and living conditions of the people. Further research is necessary to address such questions as what resources are locally available to reduce the burden of families affected by NS and how the lives of NS patients become meaningful both for themselves and for the people they associate with.
p40 Knowledge, attitude, and practices of epilepsy in the Boeny and Analanjirofo districts of Madagascar
Rija Fanomeza1, Jeremia Rakotozafy1, Raivotiana Razanakolona2, Herilala Rabefarihy3, Lalatiana Rakotonrazaka3, Dirk Teuwen4
1Medical Care Development International, Antananarivo, Madagascar; 2Ministry of Health, Mental Health Services Madagascar, Antananarivo, Madagascar; 3Humanity & Inclusion, Antananarivo, Madagascar; 4UCB Pharma, Brussels, Belgium
Purpose: The prevalence of epilepsy in Madagascar is estimated at 20.8‰. We assessed the knowledge, attitude, and beliefs of persons living with epilepsy (PwE).
Method: In 2017 we enrolled 90 randomly-selected PwE, resident in 14 villages in two districts, into this transversal, descriptive, quantitative, and qualitative study: 22 10–15-year-olds and 68 adults (≥16 years). Three researchers, including a physician, administered two standardized pre-tested and validated questionnaires in Malgach. Protocol approval was obtained from the Ministry of Health; informed consent was obtained from participants.
Results: Mean age of PwE was 24.2±SD 2.3 years. 51% were male and 53%, 10%, and 37% were from urban, semi-urban, and rural areas, respectively. Most PwE had a good understanding of epilepsy, which was often described in different local terms, mainly Aretimborona, but also Androbe and Toratorana, influenced by region, place of residence, and education level. Although 78% were receiving medical treatment, 73% considered this expensive, and 74% reported seizures in the last 2 months. Signiﬁcant numbers of respondents expressed sympathy with PwE, but 22% and 33% of PwE had experienced discrimination among their family and contacts, respectively.
Conclusion: PwE in Madagascar are knowledgeable about their condition, probably as most are receiving medical treatment, but a gap remains between knowledge and practices and attitude to the condition. The high proportion of PwE experiencing seizures may be associated with perceived high treatment costs. Improving knowledge about epilepsy could improve quality of life and care, and decrease misconceptions and stigmatization for PwE.
p41 Reasons for loss to follow-up in persons living with epilepsy following first diagnosis at the CARAES Neuropsychiatric Hospital in Rwanda
Josiane Umwiringirwa1, Fidele Sebera2, Nsanzabaganwa Wellars1, Beni Uwacu1, Peter Dedeken3, Dirk Teuwen4, Paul Boon5
1CARAES Neuropsychiatric Hospital, Kigali, Rwanda; 2Centre Hospitalier Universitaire Kigali (CHUK), Kigali, Rwanda; 3Heilig Hart Hospital, Lier, Belgium; 4UCB Pharma, Brussels, Belgium; 5Ghent University Hospital, Ghent, Belgium
Purpose: Of 235 patients with epilepsy (PwE) seen from January–June 2016 at a tertiary epilepsy center for their first visit, 81 (34.5%) had not returned for follow-up after 19 months. We determined the root causes for loss to follow-up to recommend remedial actions.
Method: This survey of PwE was performed by a multidisciplinary team of the CARAES Neuropsychiatric Hospital, comprising a neurologist, a psychiatric nurse, and a hospital research assistant. Data were collected using questionnaires on epilepsy, treatment, and causes of loss to follow-up during structured interviews with patients or their caregivers. The cause of death was assessed using the WHO Verbal Autopsy tool.
Results: Of 81 PwE lost to follow-up, 20 (24.7%) could not be interviewed: six were from neighboring countries, seven had died, and seven were not known at their registered address. Of 61 PwE interviewed, two had a revised diagnosis and treatment (narcolepsy and cardiac disease). Of the remaining 59, 27 were still on treatment and supervised at a nearby medical center. Of the 32 off-treatment patients, seven started alternative medicine.
The reasons cited for discontinuing treatment were insufficient finances (26%), cessation of seizures (26%), lack of treatment effect (26%), and misinformation on EEG, epilepsy or treatment (15%). In off-treatment patients, seizure freedom, <1 seizure/year, 1–2/month, 3–5/month, and >5/month was observed in 41%, 6%, 31%, 9%, and 13%, respectively.
Conclusion: Only 46% of interviewed PwE were on treatment. There is a clear need for better patient information on epilepsy and treatment to enhance compliance.
p42 The Role of Trained Epilepsy Counsellor in Combating Psychological Consequences of Epilepsy in Rural Kenya
Eddie Chengo, Fedrick Beuchi, Samson Gwer
Foundation For People With Epilepsy, Mombasa, Kenya
Purpose: Epilepsy is common in Kenya, with psychological consequence that can go undetected therefore delaying initiation of interventions. This delayed intervention results into severe psychological distress and even suicide. We examined the role of an incorporating an Epilepsy Counselor (EC) in clinical review to combat adverse psychological consequences of epilepsy in a rural community clinic
Method: From January 2018 to June 2018, we implemented support groups of adults with epilepsy who attended epilepsy clinic for the first time. Treatment of epilepsy alongside education and counseling was started simultaneously. The education and counseling entailed general information about epilepsy and care, and living well with epilepsy. Participants were followed up monthly over a period of six months to determine psychological functioning using Neurological Disorder Depression Inventory for Epilepsy (NDDI-E).
Results: Of the 43 participants who were attending monthly meetings, 61% (n-26) were female. During the initial visit active depression detected with NDDI-E was 78% (n-34). Significant predictors of depression were poor seizure control and misconception on causation of seizure. Following six month follow up by the EC, 91% (n=32) of the 35 patients who had active depression had significantly lower scores on NDDI-E (p = 0.001) and adherence to medication was observed in 97%.
Conclusion: There was improved health outcomes when epilepsy care services comprised both treatment and counseling services. The strategy of using trained EC in epilepsy clinics is a useful strategy that helps in better drug compliance and alleviating psychological distress
p43 Knowledge, attitudes and practices related to epilepsy in rural Burkina Faso
Athanase Millogo1, Helena Ngowi2, Hélène Carabin3, Rasmané Ganaba4, Alida Da4, Pierre-Marie Preux5
1UTH Sourô Sanou, Bobo-Dioulasso, Burkina Faso; 2Sokoine University of Agriculture, Morogoro, Tanzania; 3Université de Montreal, Montreal, Canada; 4AfricSanté, Bobo-Dioulasso, Burkina Faso; 5Institut de neurologie Tropicale, Limoges, France
Purpose: To assess knowledge, beliefs, attitudes and practices regarding epilepsy and neurocysticercosis in rural areas in Burkina Faso
Method: : The interviews were designed to assess general perception of epilepsy, cultural beliefs and practices regarding epilepsy and people with epilepsy (PWE), and knowledge about the link between human epilepsy and porcine cysticercosis. This qualitative study used in-depth interviews with different categories of community members, including PWE, healthcare providers (HCPs) and traditional healers in three villages in rural Burkina Faso
Results: All respondents showed a good knowledge of epilepsy symptoms but very little knowledge on causes of the disease. In this community, epilepsy was often associated with witchcraft (commonly termed “black magic”). People with epilepsy were marginalized and denied certain rights such as school education and marriage. They also relied mainly on traditional medicine with a prominent role played by traditional healers. While medical personnel knew that controlling seizures would depend on the cause, the traditional healers reported to be able to cure all kinds of epilepsy as long as the patient adhered to taboos. The main “treatments” prescribed by traditional healers were to stay away from fire and refrain from pork consumption. Pork fat was believed to reduce the effectiveness of the traditional medicine.
Conclusion: For effective monitoring and management of epilepsy in Burkina Faso, there is a need to promote better knowledge of the disease in the community, including HCPs, and traditional healers
p44 Self-employment as a viable career option for persons with epilepsy
Epilepsy South Africa, Cape Town, South Africa
Purpose: To create awareness about self-employment and entrepreneurial development options for Africans with epilepsy with a view to achieving economic independence
Method: The paper is based on the experiences of Epilepsy South Africa in the field of entrepreneurial development of persons with disabilities based on the Start & Improve Your Business (SIYB) programme of the International Labour Organisation (ILO) and other programmes developed by Epilepsy South Africa.
Results: Self-employment (either in a group setting or as an individual entrepreneur is a feasible and viable career option for persons with disabilities, most notably persons with epilepsy.
Conclusion: Epilepsy South Africa is keen to form partnerships with sister organisations across the continent and further afield to share our experiences and offer training initiatives at either trainer or entrepreneurial levels.
p45 Differences in knowledge, attitude, and practices of community health workers after a single training session on epilepsy in Rwanda
Stephen Muhumuza1, Fidele Sebera1, Jean Utumatwishima2, Josiane Umwiringirwa3, Dirk Teuwen4, Peter Dedeken4, Paul Boon5, Leopold Bitunguhari1
1University Hospital Kigali (CHUK), Kigali, Rwanda; 2Ruhengeri Reference Hospital, Musanze Health District, Rwanda; 3CARAES Neuropsychiatric Hospital, Kigali, Rwanda; 4UCB Pharma, Brussels, Belgium; 5Ghent University Hospital, Ghent, Belgium
Purpose: Community healthcare workers (CHWs) are key partners in healthcare delivery; their closeness to villagers drives patient detection and referral, with adequate knowledge, attitude, and practices (KAPs) being drivers of individual effectiveness. Following a 3-day epilepsy training session by the Rwandan Organization Against Epilepsy in Musanze in August 2017, we compared KAPs in trained versus untrained CHWs.
Method: A study specific 20-item questionnaire on demographics, exposure, knowledge, practices, and stigma was administered to a group of 96 trained CHWs and 103 untrained CHWs in October/November 2017.
Results: The untrained group was younger and had lower educational qualifications than the trained group; however, they had broad exposure to epilepsy as 88% had heard of epilepsy, 70% knew someone with epilepsy, and 86% had witnessed a seizure. Knowledge of epilepsy as a brain disease was higher in trained CHWs; nevertheless, 22% still related epilepsy to beliefs of spirit possession or witchcraft. Whereas all trained CHWs refer persons living with epilepsy (PwE) to healthcare centers, only 89% of untrained CHWs would do so and they would send PwE also to traditional healers (11%) or prayers (8%). We observed significant differences in stigma toward PwE: significantly more trained CHWs would allow their daughter or son to marry a PwE, or would allow attending school or professional economic activity.
Conclusion: Training on epilepsy improved KAPs, with the largest improvement concerned reducing stigma. Specific knowledge gaps and a focus on decreasing persisting cultural and traditional beliefs for future trainings were identified.
p46 Effectiveness of the involvement of community health workers in identification and referral of persons living with epilepsy
Fidele Sebera1, Jeannine Kayirangwa2, Jean Utumatwishima2, Josiane Umwiringirwa3, Peter Dedeken4, Dirk Teuwen4, Paul Boon5
1Centre Hospitalier Universitaire Kigali (CHUK), Kigali, Rwanda; 2Ruhengeri Reference Hospital, Musanze Health District, Rwanda; 3CARAES Neuropsychiatric Hospital, Kigali, Rwanda; 4UCB Pharma, Brussels, Belgium; 5Ghent University Hospital, Ghent, Belgium
Purpose: As part of an interventional study on epilepsy with depression as co-morbidity, persons living with epilepsy (PwE) were enrolled in villages supported by three health centres in the Musanze district, Rwanda. Up to June 2018, PwE numbers seen at the three sites were much lower than expected compared with the reported prevalence of 47‰ in a door-to-door study conducted elsewhere in this district in 2017. The aim of this study was to engage Community Healthcare Workers (CHWs) in the identification and referral of PwE.
Method: CHWs based in villages served by the three health centers participated in a three-day training course on epilepsy. They were supplied with the 5-item Limoges epilepsy screening questionnaire, which had been translated into Kinyarwanda using a forward-backward translation. CHWs went door-to-door to administer the questionnaire. After one week, CHWs accompanied possible patients to their respective health centres for confirmation of the clinical diagnosis by a neurologist.
Results: The number of PwE increased from 48 individuals prior to the intervention to 669 after the intervention (a 13.9-fold increase). In Gataraga the increase was from 18 to 161, in Kimonyi from 11 to 193 and in Cyuve from 19 to 315 (8.9-, 17.6- and 16.6-fold increases, respectively).
Conclusion: This study illustrates that involving CHWs in their communities, equipped with an easy-to-administer questionnaire, may significantly decrease diagnosis and treatment gaps, so PwE ultimately benefit from access to treatment. This involvement of CHWs should be rolled out across the country.
Study supported by: UCB Pharma
p47 Epilepsy treatment gap and determinants of access to care in Nigeria
Musa Watila1, Musa Joseph2, Willem Otte3, Salisu Balarabe4, Stanley Igwe5, Michael Fawale6, Gagandeep Singh7, Josemir W. Sander8
1NIHR University College London Hospitals Biomedical Research Centre, UCL Institute of Neurology, London, United Kingdom; 2University of Maiduguri of Teaching Hospital., Maiduguri, Nigeria; 3University Medical Center Utrecht, Utrecht, Netherlands; 4Usman DanFodio University Teaching Hospital, Sokoto, Nigeria; 5Federal Teaching Hospital Abakaliki, Abakiliki, Nigeria; 6Obafemi Awolowo University Teaching Hospital, Ile-Ife, Nigeria; 7Dayanand Medical College, Ludhiana, India; 8NIHR University College London Hospitals Biomedical Research Centre, UCL Institute of Neurology, London, United Kingdom
Purpose: This study assessed the epilepsy treatment gap (ETG) and factors associated with access to care and adherence from three sites of Afikpo, Ijebu-Jesa and Gwandu in the Southeast, Southwest and Northwest regions of Nigeria respectively.
Method: People with active epilepsy were recruited from a door-to-door survey undertaken between February and April 2018 using set criteria. The sociodemographic, pattern of care access and treatment-related information were obtained. ETG was defined according to the International League Against Epilepsy criteria. Potential factors for ETG were examined using multivariate logistic regression with multiple imputations.
Results: A total of 252 subjects were recruited from the three sites. The self-reported therapeutic gap was 83.3% (95% CI:78.1–87.7), while the ETG was 94.4% (95% CI: 90.9, 96.9) considering the diagnostic gap, with no difference across sites (P=0.230). The potential factors associated with access to care include stigma (OR 0.16, 95% CI: 0.04–0.71; P=0.016), cultural beliefs (OR: 0.31, 95% CI: 0.16–0.62; P=0.001), difficulty reaching a health facility (OR 0.33, 95% CI: 0.14–0.75; P=0.008), and non-acceptance of diagnosis (OR 0.36, 95% 0.15–0.85; P=0.021). Factors associated with adherence include cultural beliefs (OR 28.68, 95% CI: 1.70– 483.97; P=0.020), afternoon seizures (OR 0.006, 95% CI: 0.001–0.58; P=0.029), learning difficulty (OR 0.16, 95% CI: 0.03–0.88; P=0.035), and difficulty reaching a health facility (OR 25.44, 95% CI: 0.88–735.88; P=0.059).
Conclusion: The treatment gap is high in Nigeria. The negative cultural belief can be improved by patient and community education.
p48 Medical pluralism in beliefs and practices surrounding epilepsy care in Uganda
Caleigh Smith1, Deborah Koltai1, Patrick Smith1, Martin Kaddumukasa2, Mark Kaddumukasa2, Mayanja Kajumba2, Anthony Fuller1, Michael Haglund1
1Duke University, Durham, USA; 2Makerere University, Kampala, Uganda
Purpose: Patient and caregiver beliefs about epilepsy’s etiology and their health-seeking behaviors were investigated as a first step towards exploring collaborations within Uganda’s pluralistic health system. We explored differences amongst participants with pluralistic versus singular beliefs about causes of epilepsy in a hospital-based cohort.
Method: 626 participants were surveyed in three hospitals in Uganda. Analyses were conducted to determine whether beliefs about epilepsy etiology tended to encompass solely biological explanations or whether they were pluralistic, drawing upon biological as well as mystical or spiritual explanations. The associations of these groups with demographics and care-seeking behaviors were then explored.
Results: More than two thirds of this hospital-based sample endorsed spiritual or mystical causes of epilepsy in addition to biological ones. These pluralistic beliefs were associated with greater delays in seeking biomedical care (p<0.005), and there was a trend toward greater likelihood of accessing traditional or pastoral healers for care (p<0.06). People endorsing only biological beliefs were older (p<0.01), more educated (p<0.05) and had higher incomes (p<0.05) than those with pluralistic beliefs.
Conclusion: These results underscore the importance of understanding sociocultural beliefs in impacting treatment-seeking behavior for epilepsy care. Thus, a more inclusive approach to health care delivery that respects and addresses pluralistic beliefs may facilitate treatment. Understanding the complex relationships between beliefs, practices and health care systems related to epilepsy will be crucial for making progress towards the WHO’s strategic plan to reduce the epilepsy treatment gap.
p49 Impact of initial health care seeking for epilepsy in a randomized national community based sample
Martin Kaddumukasa1, Mark Kaddumukasa1, Deborah Koltai2, Angelina Kakooza1, Joao Vissoci2, Thiago Rocha2, Anthony Fuller2, Michael Haglund2
1Makerere University, Kampala, Uganda; 2Duke University, Durham, USA
Purpose: In a national sample of people identified to have epilepsy, we explore initial choice in health care seeking in the context of Uganda’s pluralistic health system where people may seek care from traditional healers, pastoral healers, and/or biomedical providers.
Method: A national prevalence study was conducted collaboratively by the Uganda Bureau of Statistics, Makerere University, and Duke University. There were 8819 households that participated in the study yielding 35055 individual responses. For this analysis, we used the 732 people that were identified as having epilepsy. All 732 participants completed a help-seeking survey which explored their health care utilization practices.
Results: We will report the patterns of initial help seeking behavior and how they impact subsequent health care seeking. Specifically, we will detail of the 732, how many sought care first from a traditional healer, a pastoral healer, a biomedical provider, or did not seek care at all. We will present demographic predictors of these care choices, and the impact initial choice has on the delay to biomedical care.
Conclusion: Understanding the sociocultural context in which health care utilization occurs is essential to building interventions to improve care. Decisions about resource allocation, and targets of education and collaboration rest upon appreciating where and how delays to care occur. We will discuss how our findings can be used to maximize allocation of sensitization programs at community, family, and leader levels, facilitate collaborative communication with traditional and pastoral healers, and inform discussion about resource allocation and infrastructure strengthening of biomedical care.
p50 The Stigma context, Social Inequalities and Knowledge Gaps about Epilepsy among Ayete People in Southwestern, Nigeria
University of Ibadan, Ibadan, Nigeria
Purpose: Previous epilepsy studies focused on the prevalence and burden without enough discussion on how the meanings influence stigmatization. This study uses an interdisciplinary approach to explain the meanings and stigmatization in epilepsy cases and the healing-processes in Ayete.
Method: Structured questionnaires were administered to 250 randomly selected respondents. Qualitative data were elicited using participant-observation; In-depth Interviews with Lay referrals of People Living with Epilepsy (PWE). Life histories of 5 PWE and how the illness has affected them and their lay referrals was examined.
Results: Epilepsy is generally called “Warapa”, classified as humanly or god-inflicted. Ninety-seven percent agreed for humanly-inflicted while (3%) for godly-inflicted. FGDs further categories epilepsy manifestations into five: Ogun-oru (night-battle), Gbare (sudden-seizure), Otiti (sudden-gradual push), Waaku (Come-die) and Warapa (epilepsy). From quantitative findings, 210 (84%) of 250 respondents cannot share the same cup or plates with an epileptic patient, even though 121 (63%) of the 193 respondents knew and agreed that epilepsy is not contagious. Life histories of PWE revealed that they go through humiliation, discrimination, and stigmatization that made family members abandon them. Castigation existed as felt or enacted stigma changing life-patterns of PWE from that of independence to dependence. The treatment path differs from healer to healer and the ingredients used symbolize connection to life.
Conclusion: Meanings given to epilepsy increased the stigmatization process. These meanings occurred at different stages of epilepsy manifestation and are embedded in symbols and misconception. The treatment paths by the traditional healers could help in overcoming the epilepsy and in adjusting to life.
p52 An analysis of the psychosocial impact of epilepsy in Zimbabwe
Arjune Sen1, Taurai Katzidi2, Gift Ngwende3, Sloan Mahone1
1University of Oxford, Oxford, United Kingdom; 2Epilepsy Support Foundation, Harare, Zimbabwe; 3University of Zimbabwe College of Health Sciences, Harare, Zimbabwe
Purpose: There is little historical and ethnographic work examining why epilepsy is viewed with such stigma, fear, and misunderstanding across Africa. In particular, the impact of epilepsy on long-term relationships and marriage is poorly appreciated, despite the spouse often being the primary care giver and therefore the individual perhaps best placed to improve the life of the person with epilepsy (PWE).
Method: Through a series of community-based workshops organised by the Epilepsy Support Foundation of Zimbabwe, we analysed stigmatisation of epilepsy in urban and rural Zimbabwe. Workshops consisted of initial presentations on epilepsy followed by small group discussions relating to the impact of epilepsy in marriage and the barriers that may be faced by people with epilepsy who wish to wed.
Results: Around 100 people participated in workshops based in Harare, Masvingo and Gweru. Considerable stigmatisation of PWE persists, particularly perpetuated by older members of local communities. Men with epilepsy felt disempowered by their ability to not work or participate in certain social activities. Both men and women agreed, however, that females with epilepsy were more likely to be subject to prejudice and potentially exposed to greater risk – for example having to cook on open fires away from other village members. Declaration of epilepsy prior to marriage was thought likely to prevent marriage from occurring, while the uncovering of epilepsy after marriage could lead to separation
Conclusion: This initial study again emphasised that multiple misconceptions surround epilepsy that can lead to severe stigmatisation of PWE both before and during marriage.
p51 Behaviour and therapeutic itinerary of epileptic patients Marrakech city and surrounding regions in South Morocco
Abdelaati El Khiat1, Najib Kissani2, Abdellatif Abbaoui1, Mohamed Chraa3, Halima Gamrani1, Mohamed Kamal Hilali4
1Cadi Ayyad University, faculty of sciences Semlalia, Neurosciences, Pharmacology and Environment Unit, Marrakech, Morocco; 2Neurology Department, University Hospital of Marrakech, Marrakech, Morocco; 3Clinical and Experimental Neuroscience Laboratory, FMPM, UCAM, Marrakech, Morocco; 4Cadi Ayyad University, faculty of sciences Semlalia, Laboratory of human ecology, Marrakech, Morocco
Purpose: Epilepsy is a chronic, universal but surely unequal disorder of various etiologies and prognoses. This condition is still laden with myths in the majority of the Moroccan population. Despite the existence of well-established medicinal treatments and increasingly comprehensive care, access to antiepileptic care is still limited, especially for rural populations
Method: We carried out a prospective study, with a questionnaire filled out by 110 patients to identify the therapeutic itinerary of patients with epilepsy (or epileptic disorders) as well as the behavior of patients and their families towards this disease in Marrakech and the surrounding region of Marrakech-Safi, data was analyzed descriptively with SPSS version 18.
Results: Our results showed that 63.6% of the patients questioned, believed in a supernatural origin of the disease and 76.4% attended for professional medical care after their first seizure. In addition, more than half of our patients (51.8%) consulted a religious leader for the initial consultation, 51.0% of whom were women and 49.0% were male. The low socioeconomic status of patients with epilepsy, 74.5% of whom were unemployed, impeded the effective management of this disease.
Conclusion: These results suggest that the management of patients with epilepsy (or epileptic disorders) in Africa, and particularly in Morocco requires, in addition to the reinforcement of human and material resources, an effort to educate and positively influence the family and the social environment as a whole.