PHQ-9 was translated to Kinyarwanda using translation-back translation and validated by a discussion group. For validation, PwE of greater than or equal to15 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. 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 (greater than or equal to5) for mild and moderate depression and greater than or equal to7 for severe depression. PHQ-9 validation in Kinyarwanda creates the capacity to screen PwE in Rwanda at scores of greater than or equal to5 for mild or moderate and greater than or equal to7 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.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Background and purpose
In Rwanda, epilepsy prevalence ranges between 29‰ and 49‰. Many women living with epilepsy (WwE) are of childbearing age. Epilepsy characteristics and management, ...contraception, pregnancy, puerperium and stigma in WwE presenting at the neurology clinic of Ndera, Rwanda, were investigated.
Methods
This prospective cross‐sectional study investigated demographics, epilepsy characteristics, treatment, contraception, folic acid use, pregnancy, puerperium and stigma in WwE aged ≥18 years. Subgroups were analysed by status of any pregnancy and time of epilepsy diagnosis relative to pregnancy, with significant differences expected.
Results
During December 2020 and January 2021, a hundred WwE were enrolled (range 18–67 years). Fifty‐two women had never been pregnant, 39 women had epilepsy onset before pregnancy and nine were diagnosed after pregnancy. No significant differences in age, marital status or occupation were observed. Contraception was used by 27%, of whom 50% were taking enzyme‐inducing anti‐epileptic medication. Valproate was used by 46% of WwE of reproductive age. Thirty‐nine women with epilepsy onset before pregnancy reported 91 pregnancies, with 14% spontaneous abortions. None used folic acid before conception, and 59% only during pregnancy. Five of 78 newborns were preterm. No offspring had major congenital malformations. Nearly 25% of WwE were not compliant with their anti‐epileptic medication schedule during pregnancy or breastfeeding. Internalized stigma was observed in more than 60%. Up to 25% had been discriminated against at school or work.
Conclusion
A comprehensive strategy considering the reproductive health and societal challenges of WwE is needed to drive optimal epilepsy management, reproductive health outcomes and societal inclusion.
Objectives
Up to 85% of people living with epilepsy (PwE) reside in low‐and middle‐income countries. In sub‐Saharan Africa, the lifetime prevalence of epilepsy is 16 per 1000 persons. In Northern ...rural Rwanda, a 47.7 per 1000 prevalence has been reported. As variations in prevalence across geographical areas have been observed, we studied the prevalence in Southern rural Rwanda using the same robust methodology as applied in the North.
Methods
We conducted a three‐stage, cross‐sectional, door‐to‐door survey in two rural villages in Southern Rwanda from June 2022 to April 2023. First, trained enumerators administered the validated Limoges questionnaire for epilepsy screening. Second, neurologists examined the persons who had screened positively to confirm the epilepsy diagnosis. Third, cases with an inconclusive assessment were separately reexamined by two neurologists to reevaluate the diagnosis.
Results
Enumerators screened 1745 persons (54.4% female, mean age: 24 ± 19.3 years), of whom 304 (17.4%) screened positive. Epilepsy diagnosis was confirmed in 133 (52.6% female, mean age: 30 ± 18.2 years) and active epilepsy in 130 persons. Lifetime epilepsy prevalence was 76.2 per 1000 (95% CI: 64.2–89.7‰). The highest age‐specific rate occurred in the 29–49 age group. No gender‐specific differences were noted. In 22.6% of the PwE, only non‐convulsive seizures occurred. The treatment gap was 92.2%, including a diagnosis gap of 79.4%.
Conclusion
We demonstrated a very high epilepsy prevalence in Southern rural Rwanda, with over 20% of cases having only non‐convulsive seizures, which are often underdiagnosed in rural Africa. In line with previous Rwandan reports, we reiterate the high burden of the disease in the country. Geographic variation in prevalence throughout Africa may result from differences in risk and aetiological factors. Case–control studies are underway to understand such differences and propose adapted health policies for epilepsy prevention.
Abstract This study, supported by the Rwandan Ministry of Health and the World Health Organization, was conducted in 2005 to determine the prevalence of epilepsy and its sociocultural perception in ...Rwanda, as well as epilepsy-related knowledge and practices of health-care professionals (HCPs). A cross-sectional, nationally representative survey was conducted throughout Rwanda by trained investigators. Participants were recruited by random cluster sampling based on the organization of administrative units in the country. Overall, 1137 individuals (62% from rural areas) were interviewed. The prevalence of epilepsy was estimated to be 49 per 1000 people or 41 per 1000 for active epilepsy. Onset of epilepsy before the age of 2 years was reported in 32% of the cases. Family history of epilepsy, head trauma, and premature delivery were reported in 53%, 50%, and 68% of the cases, respectively. Most (68%) patients did not receive any medical treatment for epilepsy; 21.5% had received some form of traditional treatment. According to responses from the general population, people with epilepsy should not be entitled to schooling (according to 66%), to work (according to 72%), to the use of public places (according to 69%), or to marriage (according to 66%). Furthermore, 50% believed that epilepsy was untreatable, and 40% thought that it was transmissible. Of the 29 HCPs interviewed, the majority knew the definition of epilepsy and status epilepticus, as well as basic treatment options and side effects. However, 90% believed that treatment was only necessary in the first week after a seizure. Living with epilepsy was associated heavily with stigma, and a significant treatment gap (68%) was identified. Following this study, numerous actions have been taken by the Rwandan government, the Rwandan League Against Epilepsy, and several nongovernmental organizations to increase awareness about epilepsy and to close the treatment gap. An overview of these activities is provided.
Summary
Objective
Because outcome data inform and drive healthcare decisions and improvement of patient care, this study aimed to gain a deep understanding of sociodemographic profiles and treatment ...outcomes of newly presenting and recently diagnosed persons living with epilepsy (PwE) at a tertiary epilepsy center in Rwanda.
Methods
In June 2016 (T1), as a first stage of this single‐center cohort study, an ambispective chart review was conducted on baseline sociodemographic and disease characteristics of PwE using a structured questionnaire. Missing data were obtained by phone interview. In 2017, follow‐up data were collected by phone interview on treatment outcomes after 15‐months (T2).
Results
Of 406 PwE screened, 235 were included at T1 and outcomes on 166 PwE were obtained at T2. More than 70% were <20 years of age, with a male preponderance. A high number of patients were aged ≥20 years, were single (67.4%), unemployed (41.5%), and had no formal education or primary level education (53.9%), possibly reflecting stigma. A mean delay in diagnosis since first seizure increased with age at first seizure, amounting to 3 years for patients aged ≥20 years. At T2, 69.6% of 166 patients who could be contacted reported no seizures in the previous month. Valproate monotherapy was the most frequently prescribed treatment. At T2, 47% had discontinued treatment, which was often not recommended by a physician, despite medical insurance coverage in >90% of patients. Only 19% reported an adverse event. Marked and partial improvement in quality of life (QoL) was reported by, respectively, 50.9% and 32.7% of patients.
Significance
Encouraging results on improved seizure control and QoL were observed at follow‐up. The treatment gap remains high due to loss to follow‐up and treatment discontinuation. In this article, we discuss needs and recommendations for improving patient care, requiring concerted efforts of stakeholders at all levels of the healthcare system.
•Future actions to improve SUDEP reporting include training of healthcare professionals.•Future actions to improve SUDEP reporting include development of easy to use tools that ensure complete case ...reporting.
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.
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.
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.
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.
•WHO Verbal Autopsy Questionnaire gives insight into epilepsy mortality and SUDEP.•Probable SUDEP rate in Rwandan cohort of 235 PwE was 7.1 per 1000 patient-years.•Home visits are encouraged to investigate the cause of death in PwE.
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.
Introduction
: In Rwanda, major depressive disorder affects 11.9% of the population and up to 35% of genocide survivors. Mental health services remain underutilized due to stigma and lack of ...awareness. Increasing the ability and capacity to diagnose and treat mental disorders is considered important to close this gap. We describe the translation, validity, and reliability assessment of the Hamilton Depression Rating Scale (HDRS) as a diagnostic tool for moderate to severe depression in Rwanda.
Methods
: The HDRS-21 was translated by a multi-group taskforce. We validated the translation against expert assessment in a comparative study on a sample of patients living with depression and of healthy volunteers. Psychometric properties, namely internal structure, reliability, and external validity were assessed using confirmatory factor analysis, three reliability calculations, and correlation analysis, respectively. Maximized Youden’s index was used for determining diagnostic cut-off.
Results
: The translated version demonstrated a kappa of 0.93. We enrolled 105 healthy volunteers and 105 patients with confirmed mild to severe depression. In the confirmatory factor analysis, HDRS had good factor loadings of 0.32–0.80. Reliability coefficients above 0.92 indicated strong internal consistency. External validity was shown by good sensitivity (0.95) and specificity (0.94) to differentiate depression from absence of depression. At a cut-off point of 17 for the diagnosis of depression, sensitivity and specificity were both 0.95 relative to gold standard.
Conclusion
: The validated HDRS in Kinyarwanda with diagnostic cut-off provides mental healthcare staff with an accurate tool to diagnose moderate to severe depression, enabling closure of the diagnosis and treatment gap.
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