Epilepsy and neurocysticercosis in rural areas of the Bolivian Chaco: What has changed during the last 30 years?

OBJECTIVE: Neurocysticercosis (NCC) is considered the major cause of epilepsy in endemic regions. In the rural areas of the Bolivian Chaco prevalence of NCC among people with epilepsy (PWE) was 27.4%, according to a population-based survey carried out in 1994. The aim of the study was to estimate the prevalence of Epilepsy Associated with Tonic-Clonic Seizures (EATCS) and to evaluate the prevalence of NCC among PWE in the rural communities of the Bolivian Chaco after 30 years. METHODS: Twenty-two rural communities (total population 12 852) were involved in the study. PWE in the study area were ascertained by multiple sources and the diagnosis was confirmed by a neurologist. All PWE identified were invited to undergo brain CT scan examination and diagnosis of NCC was sought according to the revised Del Brutto criteria. RESULTS: Seventy-eight PWE (30 men, 38.4%; mean age at onset was 12.7 ± 13.2 years) with EATCS were identified giving a crude prevalence of 6.1/1000 (95% CI: 4.7-7.3). Due to the COVID-19 lockdown, the study was interrupted in 2020 and only 36 PWE (46%) of the whole sample underwent CT scan examination. Of these, 8 (22.2%) fulfilled the criteria for NCC of whom 6 (75%) presented only single or multiple calcifications. SIGNIFICANCE: This is the first study reassessing the prevalence of NCC among PWE after 30 years, in the same rural area and using a population-based design. T. solium is still endemic in the Bolivian Chaco where more than 20% of EATCS may be attributable to NCC. Our findings show a substantially unchanged prevalence of NCC over the past 30 years despite improved knowledge, underlining the need for active intervention programs to control T. solium transmission in this area. PLAIN LANGUAGE SUMMARY: Neurocysticercosis is still endemic in the Bolivian Chaco. The proportion of epilepsy attributable to neurocysticercosis is about 22%. Systematic efforts towards elimination of neurocysticercosis in these areas should be implemented.

Prevalence of epilepsy in the rural area of the Bolivian Gran Chaco: Usefulness of telemedicine and impact of awareness campaigns.

OBJECTIVE: The objective of this study is to estimate the prevalence of epilepsy with Tonic-Clonic (TC) seizures in rural areas of the Bolivian Gran Chaco and to evaluate the usefulness of telemedicine in this context. METHODS: The study was carried out in the Isozo Area, southern-eastern Bolivia. Twenty-five rural communities with a population of 8258 inhabitants were included in the survey. Trained community-health workers administered a validated single screening question to the householders (stage I). A second face-to-face questionnaire was administered to each positive subject (stage II). At stage II subjects were also screened using the smartphone app "Epilepsy Diagnosis Aid". Subjects screened positive at stage II underwent a complete neurological examination to confirm the diagnosis (stage III). Due to the COVID-19 lockdown, some subjects have been evaluated through a digital platform (Zoom®). RESULTS: One-thousand two-hundred and thirteen interviews were performed at stage I, corresponding to a total screened population of 6692 inhabitants. Thirty-eight screened positive were identified at stage I and II and of these, 28 people with epilepsy were identified, giving an overall prevalence of 4.2/1000 (95% CI 2.6-5.7). Prevalence rate steeply increased with age reaching a peak of 7.9/1000 in the population aged 20-29 years without significant differences between women and men. For almost 50% of the screened positive subjects, confirmation of epilepsy by a neurologist at stage III was achieved through simple videoconsultation. After a simultaneous awareness campaign, 22 self-reported PWE requested a consultation and, among them, 11 had a diagnosis of epilepsy confirmed. SIGNIFICANCE: This study shows a prevalence estimate close to those reported for LMIC. Simple videoconsultation and specific apps may be valuable tools in epidemiological research. Awareness campaigns are important allies for a full case identification, particularly in contexts where higher rates of stigma are recorded.

The impact of COVID-19 pandemic on frail health systems of low- and middle-income countries: The case of epilepsy in the rural areas of the Bolivian Chaco.

INTRODUCTION: The Coronavirus disease 2019 (COVID-19) has put some health systems under pressure, especially in low- and middle-income countries. We aimed at evaluating the impact of COVID-19 emergency on the management of people with epilepsy (PWE) living in the rural communities of the Gran Chaco area of the Plurinational State of Bolivia. MATERIALS AND METHODS: We selected a sample of PWE living in the rural communities of the Bolivian Chaco. A standardized questionnaire was developed, consisting of six questions addressing drug availability, drug discontinuation, personnel responsible for drug retrieval during the lockdown, and the presence of seizures in the two months preceding the interview. Questionnaires were administered by community health workers of the rural health centers in September 2020. RESULTS: Seventy PWE (38 men, 54.3%; mean age 26.9 ±â€¯16.7) were interviewed. During the lockdown the large majority of them (n = 51, 73.9%) reported an irregular medication intake mainly due to the lack of antiseizure medications in the local health posts, leading to an increase in seizure frequency. CONCLUSION: The COVID-19 pandemic has unmasked the frailty of the Bolivian health system, especially for the management of chronic diseases such as epilepsy in the rural communities.

Usefulness of a smartphone application for the diagnosis of epilepsy: Validation study in high-income and rural low-income countries.

INTRODUCTION: In low- and middle-income countries (LMIC), the diagnosis of epilepsy should be made by Non-Physician Health Workers (NPHW) who are widely available in these settings. Recently a smartphone app (Epilepsy Diagnosis Aid) has been developed and validated to be used by NPHW, in order to confirm the diagnosis of epilepsy. The aim of our study was to perform a validation of the app in two different contexts: a hospital-based setting of a high-income country (HIC) and a population-based setting of the rural communities of a LMIC. MATERIAL AND METHODS: For the hospital-based setting, the app was administered to a sample of patients with epilepsy (PWE) and to a sample of subjects affected by syncope attending the epilepsy center of the University of Catania. For the population-based setting, performed in the rural communities of the Gran Chaco region in Bolivia,the app was administered by NPHW to a sample of PWE previously identified. Sensitivity and specificity were calculated for the diagnosis of epilepsy. RESULTS: In the hospital-setting, the app was administered to 100 PWE and 20 syncopes. A probability score > 80 showed a sensitivity of 76% (95%CI 66.4-84) and a specificity of 100% (95%CI 83.2-100) for the diagnosis of epilepsy; higher values were found for active epilepsy with tonic-clonic seizures. In the rural-setting, the app was administered to 38 PWE, giving a sensitivity of 92.1% (95%CI 78.6-98.3). CONCLUSION: The app for epilepsy could represent a valuable instrument, which can be easily employed by trained NPHW to diagnose epilepsy in primary health-care settings of LMIC.

Comic book-based educational program on epilepsy for high-school students: Results from a pilot study in the Gran Chaco region, Bolivia.

INTRODUCTION: In low- and middle-income countries (LMIC), epilepsy still represents a significant health challenge. In the Bolivian Chaco, we have previously found high levels of stigma towards people with epilepsy (PWE) especially expressed by high school students. In order to increase the knowledge about epilepsy, we have tested a comic book-based intervention on a sample of high school students. METHODS: The study has been conducted in the Bolivian Chaco region where two urban and two rural classrooms have been randomly selected. Students have been administered a knowledge, attitudes, and practices (KAP) questionnaire, and then they underwent a comic book-based educational program where they were randomly assigned either to an autonomous reading or a character interpretation methodology. The same KAP questionnaire has been administered after the teaching session and at a three months follow-up. Mean KAP scores at the baseline were compared with the after teaching and the three-month assessment. RESULTS: Eighty-three students with a mean age of 15.5 ±â€¯0.9 years, of whom 38 (45.8%) males, were recruited. After the comic book session, students improved in the global score (p < 0.001) and in the knowledge (p < 0.001), attitudes (p = 0.004), and practices (p < 0.001) subscores. Both the autonomous reading and the character interpretation groups significantly improved in the global score, but only the latter improved in all the subscores. At the three months follow-up, there were no differences in the global, knowledge, and attitudes subscores, compared with scores immediately after the intervention. CONCLUSION: Using a comic book to teach about epilepsy led to a significant improvement in the knowledge, attitudes, and practices about the disease in high school students of LMIC. This teaching strategy can be easily implemented in LMIC.

Demanda asistencial neurológica ambulatoria en un centro de consulta privada en Santa Cruz de la Sierra, Bolivia / Outpatient neurological assistance demand in a private consultation center of Santa Cruz de la Sierra, Bolivia

OBJETIVO: analizar las variables demográficas y diagnósticas que condicionan la demanda asistencial ambulatoria de la consulta neurológica privada por primera vez. MÉTODOS: estudio observacional, descriptivo, retrospectivo, de la demanda de consultas ambulatorias de primera vez en un centro neurológico privado, durante 24 meses (enero-2016 hasta diciembre-2017). La información médica fue obtenida a partir de registros clínicos computarizados registrándose: edad, género y diagnóstico según la Clasificación Internacional de Enfermedades, 10 edición (CIE-10). RESULTADOS: el total de pacientes del estudio fue de 2 372, (60%) fueron mujeres. La edad media fue de 42,6 años ± 18,8 años, (42,20%) son mayores de 65 años. El diagnóstico más frecuente fue cefalea primaria (33,4%); seguido por epilepsia (14%); cervicalgia, dorsalgia y lumbalgia (13,2%), trastornos psiquiátricos (6,5%). En mayores de 65 años el deterioro cognitivo fue el diagnóstico más frecuente (14,68%), seguido de movimientos anormales. CONCLUSIÓN: los pacientes neurológicos son predominantemente menores de 65 años y de sexo femenino. La patología más frecuente fue la cefalea primaria.(AU)

OBJECTIVES: to analyze the demographic and diagnostic variables that condition the ambulatory care demand of the private neurological consultation for the first time. METHODS: observational, descriptive, retrospective study of the demand for first-time outpatient consultations in a private neurological center, for 24 months (January-2016 to December-2017). The medical information was obtained from computerized clinical records by registering: age, gender and diagnosis according to the International Classification of Diseases, 10 edition (ICD-10). RESULTS: the total number of patients in the study was 2372, (60%) were women. The mean age was 42.6 years ± 18.8 years, (42.20%) are over 65 years. The most frequent diagnosis was primary headache (33.4%); followed by epilepsy (14%); cervicalgia, dorsalgia and low back pain (13.2%), psychiatric disorders (6.5%). In older than 65 years cognitive impairment was the most frequent diagnosis (14.68%), followed by abnormal movements. CONCLUSIONS: neurological patients are predominantly under 65 years of age and female. The most frequent pathology was primary headache.(AU)

A screening questionnaire for generalized tonic-clonic seizures: Hospital-based validation vs field-validation method.

The majority of the screening questionnaires for epilepsy have been validated in hospital settings. We previously developed and used for field validation a screening tool to detect generalized tonic-clonic seizures (GTCS) in the rural communities of the Chaco region of Bolivia. The objective of the present study was to perform a hospital-based validation of the same questionnaire and to compare the levels of accuracy obtained when validated in the field or in a hospital-based context. We carried out a hospital-based validation in the Hospital Hernandez Vera of Santa Cruz, Bolivia, where we enrolled patients affected by epilepsy with GTCS and controls. Sensitivity, specificity, and positive and negative predictive values (PPV and NPV) were calculated. One hundred twenty questionnaires were administered to 59 patients (27 men [45.8%]; mean age ± SD = 32.4 ± 14.2 years) and 61 controls (27 men [44.3%]; mean age ± SD = 32.6 ± 14.3 years). We obtained levels of accuracy of 100%. Sensitivity and PPV were significantly higher than the estimates obtained in the field-validation study (sensitivity 100% vs 76.3%; PPV 100% vs 69.0%). Our screening questionnaire showed a significantly lower level of sensitivity when validated in the field, confirming that hospital-based validation can lead to an overestimation of sensitivity.

Knowledge, stigma, and quality of life in epilepsy: Results before and after a community-based epilepsy awareness program in rural Bolivia.

INTRODUCTION: Epilepsy represents around 0.7% of the overall global burden of diseases and is particularly prevalent and associated with significant disability in low- and middle-income countries (LMIC) in Latin American Countries (LAC). A community-based epilepsy awareness program was carried out by our group in the rural areas of the Chaco region, Plurinational state of Bolivia, to improve the knowledge about epilepsy, with a first part directed toward general practitioners and a second part toward nurses and community health workers (CHWs) of the rural communities with a positive outcome. The objective of the study was to assess the level of knowledge, attitudes, and practices toward epilepsy, the stigma related to epilepsy and the quality of life in people with epilepsy (PWE) before and after the interventional campaign directed toward representative members of the rural communities in the Chaco region in Bolivia. METHODS: The study was conducted in three areas of Bolivia. Key subjects from each community were randomly selected. Before and after the courses they answered a questionnaire to assess their knowledge, attitudes, beliefs, and practices about epilepsy, a validated Stigma Scale of Epilepsy (SSE) and Quality of Life in Epilepsy Inventory-10 (QOLIE-10). RESULTS: Two hundred sixteen subjects were involved in the program. Only 133 (61.6%) subjects completed the questionnaires a month after the educational program. A significant improvement was recorded in knowledge, attitudes, and practices toward epilepsy, and a significant reduction was found in the mean SSE total score (38.3 ±â€¯14.7 vs. 28.5 ±â€¯12.3; p < 0.01), reflecting a reduction of stigma levels. Regarding the quality of life, after the training, PWE stated to experience less depression, memory difficulties, work or social issues, and seizure worry. CONCLUSION: Our study confirms that continuous educational campaigns can lead to a significant change in the social perception and attitudes toward epilepsy.

Treating People With Epilepsy in Rural Low-Income Countries Is Feasible. Observations and Reflections From a "Real Life Experience" After a Long Lasting Intervention in the Rural Chaco.

Introduction: Epilepsy represents an important public health issue, in particular in low and middle-income countries where significant disparities are present in the care available for patients with epilepsy. Treatment cost and unavailability of drugs represent important barriers in treating people with epilepsy especially in rural setting. Aim of the study was to evaluate, by means of routine data, the current real-life clinical practice in epilepsy in the rural communities of the Plurinational State of Bolivia. Treatment activity followed educational campaigns and an anthropological fieldwork over more than 20 years. Material and Methods: Medical records of people with epilepsy (PWE) living in the rural communities of the Bolivian Chaco who received antiepileptic drugs (AEDs), from 2012 to 2016, and were followed-up for at least 1 year were analyzed. Treatment delivery and follow up visits were managed by a neurologist with the support of rural health care workers. Results: From 2012 to 2016, 157 PWE (76 men with a mean age of 24.2 ± 15.7) have been included in the study. Structural epilepsy was the most common type, recorded in 54 cases (34.4%) and the most common reported causes were perinatal factors, present in 11 subjects (20.0%). Almost all patients presented epilepsy with generalized tonic-clonic seizures (91.4%). The most common AED prescribed was phenobarbital followed by carbamazepine. During the follow-up, a dramatic seizures reduction was observed, with 31 subjects (19.7%) being seizures-free at the last follow-up. However, 48 subjects (30.6%) did not assume the medication regularly and 10 interrupted the drug intake. More than 20% of PWE did not receive any financial supports for AEDs. During the follow-up period 10 patients died but only in one case the death was probably caused by epilepsy. Conclusion: Our study demonstrated that PWE in rural areas of the Bolivian Chaco are willing to seek medical attention and to receive antiepileptic treatment. However, improvement in care is needed to assure compliance to AED treatment, including activity to increase awareness toward epilepsy among community members and health staff of the rural communities and to guarantee the coverage of treatment costs and drug supply.

Knowledge and attitudes towards epilepsy among nonmedical health workers in rural Bolivia: Results after a long-term activity in the Chaco region.

INTRODUCTION: Epilepsy represents a major global healthcare issue, particularly in low- and middle-income countries (LMIC), where nonmedical health workers play a key role in providing care to people with epilepsy (PWE). Over the last 20 years, many projects have been carried out by our group in the Chaco region, Plurinational State of Bolivia, with the aim of enhancing knowledge about epilepsy. However, the level of knowledge of epilepsy that nonmedical health workers have reached has never been assessed until now. The main objective of our study was to assess the level of knowledge, attitudes, and practices (KAP) towards epilepsy among nonmedical health staff of the rural communities of the Chaco region in Bolivia. METHODS: The study was conducted in three departments of Bolivia. The nonmedical health personnel were invited to participate in a training program. They answered a validated questionnaire to evaluate their knowledge and attitudes towards epilepsy before and after the courses. RESULTS: One hundred nineteen subjects [42 men (36.2%); mean age 29.3 ±â€¯1.1 years] were interviewed among community health workers and nurses before the courses, demonstrating a very good level of knowledge regarding epilepsy and its causes. Only 55 health workers participated in the second training module, and their answer did not significantly differ from the baseline. CONCLUSION: Our study confirms the usefulness of continuous educational campaigns, especially directed to nonspecialist healthcare providers of rural communities of LMIC, as they may be the only persons responsible for providing healthcare to PWE in that setting. Moreover, the importance of the baseline assessment of KAP was highlighted in order to adapt the educational campaigns to the baseline level of knowledge found.

Knowledge, attitudes, and practices towards epilepsy among general practitioners in rural Bolivia: Results before and after a training program on epilepsy.

INTRODUCTION: Epilepsy represents a major health problem in low- and middle-income countries where treatment gap (TG) levels are high. The reduction of epilepsy TG in the rural area of the Chaco region, Plurinational State of Bolivia, has been the aim of many projects based on the reinforcement of the primary care setting. To plan educational campaigns directed to the healthcare professionals, it is necessary to establish their baseline knowledge level. The objective of our study was to assess the baseline level of knowledge, attitudes, and practices (KAP) towards epilepsy among general practitioners (GPs) of the rural communities of the Chaco region. METHODS: The study was conducted in three departments of Bolivia. All the GPs living in these areas were invited to participate in the study consisting of two training modules six months apart from each other, each with two-day duration. They answered a validated questionnaire to evaluate the KAP towards epilepsy before and after the courses. RESULTS: Fifty GPs [30 men (60%); mean age: 32.1±5.8years] participated in the first training course. After six months, 31 GPs (62%) [19 men (61.3%); mean age: 33±5.0years] participated in the second module. Before the training, the majority of GPs declared a low level of satisfaction about their epilepsy knowledge, which improved after the courses. A change in practices was recorded after the training, with an increased confidence to manage antiepileptic treatment. CONCLUSION: Our study showed the significant impact of specific training programs on epilepsy among GPs.

A screening questionnaire for convulsive seizures: A three-stage field-validation in rural Bolivia.

INTRODUCTION: Epilepsy is one of the most common neurological diseases in Latin American Countries (LAC) and epilepsy associated with convulsive seizures is the most frequent type. Therefore, the detection of convulsive seizures is a priority, but a validated Spanish-language screening tool to detect convulsive seizures is not available. We performed a field validation to evaluate the accuracy of a Spanish-language questionnaire to detect convulsive seizures in rural Bolivia using a three-stage design. The questionnaire was also administered face-to-face, using a two-stage design, to evaluate the difference in accuracy. METHODS: The study was carried out in the rural communities of the Gran Chaco region. The questionnaire consists of a single screening question directed toward the householders and a confirmatory section administered face-to-face to the index case. Positive subjects underwent a neurological examination to detect false positive and true positive subjects. To estimate the proportion of false negative, a random sample of about 20% of the screened negative underwent a neurological evaluation. RESULTS: 792 householders have been interviewed representing a population of 3,562 subjects (52.2% men; mean age 24.5 ± 19.7 years). We found a sensitivity of 76.3% (95% CI 59.8-88.6) with a specificity of 99.6% (95% CI 99.4-99.8). The two-stage design showed only a slightly higher sensitivity respect to the three-stage design. CONCLUSION: Our screening tool shows a good accuracy and can be easily used by trained health workers to quickly screen the population of the rural communities of LAC through the householders using a three-stage design.