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.

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.

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.

Prevalence and Incidence of Epilepsy Associated with Convulsive Seizures in Rural Bolivia. A Global Campaign against Epilepsy Project.

OBJECTIVE: we performed a three-stages door-to-door survey to estimate incidence and prevalence of epilepsy associated with convulsive seizures (EACS) in a rural area of Bolivia. METHODS: the study was carried out in the Cordillera Province, southern-eastern Bolivia. One hundred fourteen rural communities with a total population of 18,907 inhabitants were included in the survey. In order to identify subjects with EACS, trained fieldworkers 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) that, in case of positive answer, underwent a complete neurological examination to confirm the diagnosis (stage III). We estimated age and sex specific life-time and active EACS prevalence at the prevalence day (30th June 2010). Incidence risk was evaluated for the 10-year period between January 2000 and December 2010. RESULTS: on prevalence day we identified 136 subjects with EACS, 124 of whom had active epilepsy. The life-time prevalence of EACS was 7.2/1,000 (7.6/1,000 age-adjusted to the world standard population) while the prevalence of active EACS was 6.6/1,000 (6.7/1,000 age-adjusted to the world standard population). Both life-time and active prevalence showed a peak (10.3/1,000) in the 15-24 years age group and, overall, were higher among women. During the incidence study period, 105 patients living in the study area had the onset of EACS. The crude incidence risk was 55.4/100,000 (49.5/100,000 age-adjusted to the world standard population). Incidence was slightly but not significantly higher among women (58.9/100,000 versus 51.9/100,000). CONCLUSIONS: the present study demonstrated a considerable burden of EACS in the Bolivian Chaco, showing prevalence and incidence estimates close to those reported for low and middle- income countries and underlying the need of treatment programs.

Epilepsy-associated stigma in Bolivia: a community-based study among the Guarani population: an International League Against Epilepsy/International Bureau for Epilepsy/World Health Organization Global Campaign Against Epilepsy Regional Project.

Epilepsy is associated with a significant burden of social stigma that appears to be influenced by psychosocial and cultural factors. Stigma has a negative effect on the management of people with epilepsy (PWE), representing one of the major factors that contribute to the burden of epilepsy. To assess stigma perception among the Guarani population, one hundred thirty-two people living in Guaraní communities in Bolivia were invited to complete the Stigma Scale of Epilepsy questionnaire. The main determinants of stigma identified were: the fear linked to loss of control, the feelings of sadness and pity toward PWE, the difficulties faced by PWE in the professional and relationship fields, the level of education and type of seizure. Our study pointed out that, in this population, PWE face difficulties in everyday life because of epilepsy-associated stigma and the results attest to the importance of promoting community-based educational programs aimed at reducing the stigmatization process.

Sociocultural dimension of epilepsy: an anthropological study among Guaraní communities in Bolivia--an International League Against Epilepsy/International Bureau for Epilepsy/World Health Organization Global Campaign against Epilepsy regional project.

This study was performed to analyze sociocultural beliefs about epilepsy among Guaraní communities in Bolivia. People with epilepsy, their family members, the general population, and local health care personnel were interviewed about the meaning of and beliefs, feelings, and practices concerning epilepsy. Epilepsy is called mano-mano, a term that means being in a constant passage between life and death. The disease is attributed mainly to a failure to observe a fasting period and to other eating habits. Natural remedies are the most recommended treatments even though half of respondents reported that antiepileptic drugs may be effective. The concept of epilepsy as an embodied disease with natural causes appears to differ from that documented in other traditional societies. People with epilepsy do not represent a threat to the community, which seems to have an attitude aimed at their protection. Moreover, people from these communities appear to favor a combination of biomedical and traditional care systems.

Natural history and mortality of chronic epilepsy in an untreated population of rural Bolivia: a follow-up after 10 years.

PURPOSE: To evaluate the natural history and mortality of chronic epilepsy in an untreated prevalence cohort of people with epilepsy (PWE) in a rural area of Bolivia. METHODS: During 1994-1996 we carried out an epidemiologic survey in a sample of 9,995 subjects in the Cordillera province. At the end of the survey we identified 130 PWE, of whom 118 were classified as having "active epilepsy." We revisited this cohort 10 years after the prevalence survey. RESULTS: We were able to trace 103 (87.3%) of the 118 PWE previously identified. Ten of the 103 subjects died during the follow-up period. Of the 93 PWE still alive, adequate information on the occurrence of seizures was available for 71 subjects, of whom 31 (43.7%) were seizure-free for more than 5 years; only 3 of these 31 subjects have taken an antiepileptic drug (AED) for more than 1 year. Generalized seizures were associated with a better prognosis. Mortality rate in our prevalent cohort was 10.0/1,000 person-year at risk [95% confidence interval (CI) 5.5-18.3], without a significant increased risk respect to the general population [standardized mortality rate (SMR) 1.34; 95% CI 0.68-2.39]; a significant increased risk of death was found for patients with remote symptomatic epilepsy (SMR 3.0; 95% CI 1.2-6.3) but not with idiopathic epilepsy. Three of the 10 subjects died of causes possibly related to epilepsy. DISCUSSION: Our data suggest that spontaneous remission of epilepsy occurs in a substantial proportion of untreated patients affected by chronic epilepsy; concerning mortality, we found a 3-fold increased mortality in patients with remote symptomatic epilepsy.

Epilepsy and neurocysticercosis in rural Bolivia: a population-based survey.

PURPOSE: To evaluate the frequency of neurocysticercosis (NCC) in a well-defined prevalent cohort of epilepsy patients in the rural area of the Cordillera province. METHODS: We carried out a two-phase door-to-door neuroepidemiologic survey in a sample of 10,124 subjects in a rural area of the Cordillera Province, Bolivia, to detect the prevalence of the most common neurologic disorders including epilepsy. A team of health workers administered a standard screening instrument for neurologic diseases; subjects found positive at the screening phase underwent a complete neurologic examination. Epilepsy patients were diagnosed according to the definition proposed by the International League Against Epilepsy (ILAE, 1993). Epilepsy patients identified this way underwent electroencephalographic recording, computed tomography (CT) scan, and serologic evaluation to detect antibodies against Taenia solium by enzyme-linked immunoelectrotransfer blot. RESULTS: At the end of the survey, we detected 124 defined prevalent epilepsy patients. On the basis of the classification proposed by the ILAE in 1981, partial seizures were the most common type diagnosed (66 patients, 53.3%). Of the 124 patients, 105 underwent CT scan, and a serum sample was taken to detect antibodies against T. solium in 112 patients; for 97 patients, both neuroradiologic and serologic data were available. Considering radiologic, serologic, and clinical features, of these 124 patients, 34 (27.4%) fulfilled the diagnostic criteria for definitive or probable NCC proposed in 2001. Of these 34 patients 24 (70.6%) had partial seizures. CONCLUSIONS: Our data confirm a high frequency of NCC among a well-defined prevalent cohort of epilepsy patients.