Mortality of all causes and sudden unexplained death in epilepsy (SUDEP) in a cohort of 235 persons living with epilepsy in Rwanda using WHO Verbal Autopsy Questionnaire

Introduction: Mortality in persons living with epilepsy (PwE) is 1.6-9.3-fold higher than in the general population. Mortality from definite/probable Sudden Unexpected Death in EPilepsy (SUDEP) is estimated at 1.2 per 1000 person-years. We report mortality and SUDEP rate in a cohort of Rwandan PwE. Methods: PwE presenting for a first visit at the Ndera epilepsy center between January and June 2016 were followed-up prospectively. For PwE who did not attend their follow-up visit, home visits were organized. Deaths were assessed using World Health Organization Verbal Autopsy Standards age-specific questionnaires. Results: Of 235 PwE enrolled, home visits were organized for 81 (34.4%) PwE who did not return for their follow-up consultation. Seven fatalities (mortality 16.7/1000 patient-years [CI 6.7-34.3]) were recorded (aged 2-80 years). Four had an identified cause. Three were classified as probable SUDEP, resulting in a probable SUDEP rate of 7.1/1000 patient-years (CI 1.47-20.86). Probable SUDEP occurred in PwE (age: 2, 21, 34 years) showing no symptoms of illness while receiving antiepileptic treatment; in two cases, death occurred during sleep. Conclusion: Although autopsies were absent, the high mortality and probable SUDEP rates warrant future studies to establish causes of epilepsy-related deaths in Rwanda and sub-Saharan Africa. (C) 2020 The Authors. Published by Elsevier Inc

Validity, reliability and cut-offs of the Patient Health Questionnaire-9 as a screening tool for depression among patients living with epilepsy in Rwanda

Background Patients with epilepsy (PwE) have an increased risk of active and lifetime depression. Two in 10 patients experience depression. Lack of trained psychiatric staff in low- and middle-income countries (LMIC) creates a need for screening tools that enable detection of depression in PwE. We describe the translation, validity and reliability assessment of the Patient Health Questionnaire-9 (PHQ-9) as a screening tool for depression among PwE in Rwanda. Method PHQ-9 was translated to Kinyarwanda using translation-back translation and validated by a discussion group. For validation, PwE of >= 15 years of age were administered the PHQ-9 and Hamilton Depression Rating Scale (HDRS) by trained psychiatry staff at Visit 1. A random sample of 20% repeated PHQ-9 and HDRS after 14 days to assess temporal stability and intra-rater reliability. Internal structure, reliability and external validity were assessed using confirmatory factor analysis, reliability coefficients and HDRS-correlation, respectively. Maximal Youden's index was considered for cut-offs. Results Four hundred and thirty-four PwE, mean age 30.5 years (SD +/- 13.3), were included of whom 33.6%, 37.9%, 13.4%, and 15.1% had no, mild, moderate and severe depression, respectively. PHQ-9 performed well on a one-factor model (unidimensional model), with factor loadings of 0.63-0.86. Reliability coefficients above 0.80 indicated strong internal consistency. Good temporal stability was observed (0.79 [95% CI: 0.68-0.87]). A strong correlation (R = 0.66, p = 0.01) between PHQ-9 and HDRS summed scores demonstrated robust external validity. The optimal cut-off for the PHQ-9 was similar (>= 5) for mild and moderate depression and >= 7 for severe depression. Conclusion PHQ-9 validation in Kinyarwanda creates the capacity to screen PwE in Rwanda at scores of >= 5 for mild or moderate and >= 7 for severe depression. The availability of validated tools for screening and diagnosis for depression is a forward step for holistic care in a resource-limited environment

Long-Term Impact of Single Epilepsy Training on Knowledge, Attitude and Practices: Comparison of Trained and Untrained Rwandan Community Health Workers

Objectives: To close the epilepsy treatment gap and reduce related stigma, eradication of misconceptions is importantIn 2014, Community Health Workers (CHWs) from Musanze (Northern Rwanda) were trained on different aspects of epilepsy. This study compared knowledge, attitude and practices (KAPs) towards epilepsy of trained CHWs 3 years after training, to untrained CHWs from Rwamagana (Eastern Rwanda).Methods: An epilepsy KAP questionnaire was administered to 96 trained and 103 untrained CHWs. Demographic and intergroup KAP differences were analysed by response frequencies. A multivariate analyses was performed based on desired and undesired response categories.Results: Epilepsy awareness was high in both groups, with better knowledge levels in trained CHWs. Negative attitudes were lowest in trained CHWs, yet 17% still reported misconceptions. Multivariate analysis demonstrated the impact of the training, irrespective of age, gender and educational level. Knowing someone with epilepsy significantly induced more desired attitudes.Conclusion: Despite demographic differences between trained and untrained CHWs, a single epilepsy training resulted in significant improvement of desired KAPs after 3 years. Nation-wide CHW training programs with focus on training-resistant items, e.g., attitudes, are recommended

The impact of the COVID-19 pandemic on people with epilepsy living in Rwanda

Purpose: Understanding the impact of the COVID-19 pandemic on persons living with epilepsy (PwE) is important, especially in Rwanda in view of the 4.9% high prevalence of epilepsy. In low-resource settings sustainable access to antiseizure medication is limited, especially during lockdown. Moreover, social isolation and imposed changes in daily routine might induce stress, increasing seizure frequency. We measured the impact of the COVID-19 pandemic on access to care, psychological well-being and seizure frequency of persons living with epilepsy in Rwanda. Method: We conducted a cross-sectional study with a study population consisting of PwE enrolled between February-December 2018 and between December 2020-January 2021 at the tertiary CARAES neuropsychiatric hospital (Kigali). Experienced researchers administered a telephone SARS-CoV-2 survey, including QOLIE-10 questions and a Kinyarwanda validated PHQ-9 questionnaire. Results: A total of 102 patients (47 female; mean age 34 years) were included. Before lockdown, 73 PwE were seizure-free. Seizure frequency did not change significantly during lockdown (p=0.388), with only four patients reporting a seizure increase. Quality-of-life during lockdown was rated ‘not good to very bad’ in 24.8% of PwE, 47.5% felt downhearted and 91.1% were afraid of seizures. Depression was diagnosed in 15.7%, as opposed to 5.7% before lockdown. Only one patient with depression reported increased seizure frequency after having been seizure-free before lockdown. Five patients with depression reported more intense seizures during lockdown with similar seizure frequency. Shortage of anti-seizure medication at home during lockdown was reported by six PwE; one reported increased seizure frequency. Medication type was changed in another six patients with one reporting increased seizure frequency after having been seizure-free before lockdown and one reporting more intense seizures during lockdown with similar seizure frequency. Conclusion: Despite lockdown, access to care for PwE in Rwanda was maintained with limited impact of lockdown on seizure frequency, although psychological well-being was affected

Long-term impact of single epilepsy training on knowledge, attitude and practices : comparison of trained and untrained Rwandan community health workers

Objectives: To close the epilepsy treatment gap and reduce related stigma, eradication of misconceptions is importantIn 2014, Community Health Workers (CHWs) from Musanze (Northern Rwanda) were trained on different aspects of epilepsy. This study compared knowledge, attitude and practices (KAPs) towards epilepsy of trained CHWs 3 years after training, to untrained CHWs from Rwamagana (Eastern Rwanda).Methods: An epilepsy KAP questionnaire was administered to 96 trained and 103 untrained CHWs. Demographic and intergroup KAP differences were analysed by response frequencies. A multivariate analyses was performed based on desired and undesired response categories.Results: Epilepsy awareness was high in both groups, with better knowledge levels in trained CHWs. Negative attitudes were lowest in trained CHWs, yet 17% still reported misconceptions. Multivariate analysis demonstrated the impact of the training, irrespective of age, gender and educational level. Knowing someone with epilepsy significantly induced more desired attitudes.Conclusion: Despite demographic differences between trained and untrained CHWs, a single epilepsy training resulted in significant improvement of desired KAPs after 3 years. Nation-wide CHW training programs with focus on training-resistant items, e.g., attitudes, are recommended

Reproductive health challenges in women with epilepsy living in Rwanda

Background and aims: In view of a 4.9% high epilepsy prevalence in Rwanda and a 2.5% annual population growth, understanding reproductive health challenges in women with epilepsy (WwE) is important. We explored the reciprocal influence between epilepsy, anti-seizure medication (ASM) and reproductive health in Rwandan WwE. Methods: We conducted a cross-sectional study in WwE aged ≥18 years, presenting for a follow-up visit between December 2020 – January 2021 at the CARAES tertiary neuropsychiatric hospital, Kigali, Rwanda. Demographic data, epilepsy characteristics, ASM and reproductive health data were collected. Women with intellectual disability and/or psychiatric comorbidity were excluded. Results: 100 WwE were enrolled (mean age 32.2± 9.70 years). Contraception was used in 27 WwE. Progesterone-only methods were used in 88.9% of whom 50% were taking enzyme-inducing ASM. One reported a contraceptive failure. Valproate was used by 49 WwE; 47 WwE in reproductive age and 10 on contraception. Pregnancy since epilepsy diagnosis was reported by 39. Folic acid was taken by only 59% and only started after conception. Seizure increase during pregnancy occurred in 23, with nine reporting poor ASM adherence. No major congenital malformations were observed. One newborn presented minor cognitive disturbances. Ten WwE reported one or more spontaneous abortions. Premature delivery occurred in four WwE; one premature newborn died after six weeks. Conclusion: Our study underscores the need to implement contextualized clinical guidelines improving pre-, peri- and postnatal care of WwE. Availability of and access to safer ASM may decrease the risks of teratogenicity and drug interaction compared to currently available ASM

Mortality and sudden unexpected death in epilepsy in a cohort of 888 persons living with epilepsy in Rwanda

Aim Mortality among people living with epilepsy (PwE) is two- to three-fold higher than in the general population with a median standardized mortality ratio in Sub-Saharan Africa of 5.4 and Sudden Unexpected Death in EPilepsy (SUDEP) as the most common cause of epilepsy-related death. We prospectively estimated mortality and SUDEP rates in a cohort of PwE in Rwanda. Methods We conducted a longitudinal study at the tertiary CARAES Neuropsychiatric hospital (Kigali) and at three primary healthcare centres in the Musanze District, Northern Province. PwE, aged ≥15 years, were enrolled between February and December 2018. PwE not attending a close-out visit after 12 months were contacted. Upon report of a death, a neurologist travelled to meet family members and administered the WHO Verbal Autopsy Questionnaire to assess cause of death. Results Out of a total of 888 PwE ten deaths were identified, yielding a mortality rate of 11.4/1000 person-years. Seven deaths had an identified cause, four of which were directly related to epilepsy, including death following head trauma, brain hematoma, prolonged seizure and status epilepticus. No cause of death was identified in three cases and these were interpreted as probable SUDEP, yielding a SUDEP rate of 3.4/1000 person-years. Mortality rates in tertiary and primary centres were comparable. Conclusions Mortality rates are high and in line with previous reports from Rwanda. Improved treatment access and education of patients and families on death risks, including risk factors for SUDEP, should be provided so to improve treatment compliance and better seizure control

High prevalence of epilepsy in Northern Rwanda : exploring gender differences

Introduction In sub-Saharan Africa (SSA), the prevalence of lifetime epilepsy varies widely between subregions and is higher in rural compared to urban regions. Observed versus expected numbers of patients with epilepsy (PwE) in the northern province of Rwanda did not match the prevalence of 49 parts per thousand reported in 2005 in Rwanda. We report a confirmatory prevalence study focused on gender-specific observations. Methods A cross-sectional door-to-door approach was used in three rural villages. First, epilepsy screening using the Kinyarwanda version of the Limoges questionnaire was performed. Second, confirmation of epilepsy diagnosis was completed by trained physicians. Results In total, 2681 persons (56.14% female) were screened. Of 168 positively screened, 128 persons were diagnosed with epilepsy confirming the prevalence of lifetime epilepsy of 47.7 parts per thousand (CI 39.8-56.8). The diagnosis gap was 62.5% with 80 newly diagnosed. The overall female:male ratio was 1.61:1.00. A male preponderance below 9 years of age inverted to a female preponderance above 20 years of age. Female PwE had an older age at first seizure, reported different reasons for not seeking care, and differed from male PwE in possible etiology. For previously diagnosed PwE, the treatment gap was more than 77%. Conclusion A high prevalence in rural areas was confirmed, with an observed female/male ratio among the highest of published door-to-door surveys in SSA. Gender differences in associated co-morbidities and age at first seizure warrant future research of underlying etiologies and possible survival bias. A better understanding and focus on gender-associated care-seeking patterns, education, and specific needs are recommended

Evaluation of direct medical and non-medical cost of epilepsy at a tertiary neurology center in Rwanda

Introduction We evaluated the annual direct medical cost (aDMC) and direct non-medical cost (aDnMC) of epilepsy management at the Ndera tertiary hospital (Kigali, Rwanda). Methods aDMC was retrospectively calculated upon review of medical records of all persons living with epilepsy (PwE), aged >18 years, and seeking for the first time in 2018 specialist neurology care at Ndera. PwE attended the recommended monthly consultation schedule. Structured interviews were used to determine aDnMC in PwE attending consultation in August 2020. Results Mean total aDMC, based on 55 PwEs, was 248,9 US$. Mean aDMC for medical consultations, administration/technical/laboratory investigations combined, hospitalisation and anti-epileptic drugs were 30.7US$, 48.8, 7.6 US$and 161.7 US$, respectively. Weighted mean biomedical care aDnMC, based on 69 PwE, was 73.0 US$, including round-trip transportation, food, beverage, and accommodation related to the consultation. The Rwandan Community-Based Health Insurance covered medical care for eligible patients with an weighted aDMC of 226.3 US$. Annual Out-of-Pocket (OoP) cost for PwE were 163.3 US$per year. Over 50$ and 21.5 US$, respectively. Mean time spend at the hospital and mean travel time both exceeded 4hours. Conclusion Epilepsy management, measured by DMC, is an important economic burden for PwE and Rwandan health services. OoP DnMC were three times higher than DMC and exclude costs for traditional healers. Indirect costs, including travel and hospital time, were not monetised but equally represented an important burden