Quality of life in people with epilepsy: Associations with resilience, internalized stigma, and clinical factors in a low-income population.

INTRODUCTION: Epilepsy is a common neurological disorder associated with comorbidities and a reduced quality of life (QoL). Internalized stigma is negatively correlatedwiththe QoL, whereas high levels of resilience are associated with increased QoL. Although the stigma towards people with epilepsy (PWE) is expected to be higher in low-income settings than in high-income settings, further research is needed. This study aimed to examine the extent to which resilience and internalized stigma correlatewith the QoL in PWE from a low-income population. MATERIAL AND METHODS: A cross-sectional, observational, descriptive study was conducted on 60 PWE who visited the Neurology Department of the Hospital de Clinicas (Buenos Aires, Argentina) between May and September 2022. Demographic and clinical data were collected. Participants completed the Quality of Life, Enjoyment and Satisfaction Questionnaire-Short Form (Q-LES-Q-SF), the Chronic Illness Anticipated Stigma Scale (CIASS), and the Resilience Scale (RS). Variables that showed a significant association with the QoL in the univariate analysis were included in a multiple regression model. RESULTS: Participants had a low overall QoL score, with a median of 59 (95 %CI: 57.2-61.8). They had an average level of education and a high rate of unemployment. Perceived stigma was higher in the workplace than in the medical or family settings. Univariate analysis revealed that the QoL was associated with internalized stigma score, resilience score, seizure frequency, seizure etiology, work status, and educational level. The multiple regressionrevealed a significant decrease in the QoL when perceived stigma increased (p = 0.0016) or when the cause of epilepsy was structural (p = 0,006) and a significant increase in the QoL when the resilience score was higher (p = 0.0004). CONCLUSION: The QoL of PWE in a low-income context is strongly associated with their levels of resilience and internalized stigma. When addressing the social burden of epilepsy, resilience support should be increased in the care of PWE to reduce internalized stigma and improve the QoL.

Amyotrophic lateral sclerosis mortality rates among ethnic groups in a predominant admixed population in Latin America: a population-based study in Ecuador.

Current evidence suggests heterogeneity of amyotrophic lateral sclerosis (ALS) among geographic areas and populations. Lower mortality rates have been reported in admixed populations compared to European origin populations. We aimed to describe and compare ALS mortality rates among ethnic groups using a population-based approach in a multiethnic country. Annual mortality cause registers were searched to determine ALS deaths from the National Institute of Statistics and Censuses in Ecuador (INEC) from 1990 to 2016. Mid-year population was considered for each year. The time trend was assessed using a negative binomial regression. Rate ratio statistics were performed to compare the age and sex standardized rates based on the 2010 US population among ethnic groups. Overall, 570 ALS deaths were identified. ALS mortality showed an age-related profile with a peak between 55 and 70 years. After age-sex standardization on the 2010 US population, mortality rate was 0.33 (CI 0.30-0.36) per 100,000. The time trend showed an increase of ALS mortality (p < 0.001). There was no statistical difference in age-sex standardized mortality rates per 100,000 when admixed was compared to white (p = 0.231) and black (p = 0.125). Differences reached statistical significance between admixed and other ethnics (p = 0.015). Our population-based study supports the hypothesis that ALS occurrence is lower in predominant admixed populations from Latin America compared to European and Northern American populations. Further studies are needed to clarify the role of ancestral origin in ALS susceptibility.

Herbal medicine uses to treat people with epilepsy: A survey in rural communities of northern Peru.

ETHNOPHARMACOLOGICAL RELEVANCE: Epilepsy affects 150,000 people in Peru, with a prevalence of 16.6/1000 and a treatment gap of 75%. Herbal medicine (HM) is widely used in this country. AIM OF THE STUDY: We aimed to assess the use of plants in a rural community in northern Peru as part of therapeutic strategies for people with epilepsy (PWE). MATERIALS AND METHODS: The study was a cross-sectional observational and descriptive study. The inclusion criteria for people with epilepsy were 2 years of age and over, having lived in the study area for at least 3 months and a confirmed diagnosis of epilepsy by a neurologist. The information was gathered through structured interviews using a survey questionnaire. Botanical species used by people with epilepsy or traditional healers were collected and identified. RESULTS: Out of the 228 people with epilepsy included, 60.0% had used herbal remedies and 54.8% both herbal medicine and anti-epileptic drugs. The traditional healer was the first practitioner consulted by 45.2% of people with epilepsy. Sixty-six species have been mentioned by the people with epilepsy and traditional healers on the treatment of epilepsy. Carbamazepine was the most prescribed anti-epileptic drug with 33.2% of prescriptions. CONCLUSIONS: This study was the first to measure a percentage of use of herbal medicine for epilepsy in Peru. It would be interesting to conduct a pharmacological evaluation of the most commonly used species on epileptic models to validate and secure their use.

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.

Epilepsy-associated levels of perceived stigma, their associations with treatment, and related factors: A cross-sectional study in urban and rural areas in Ecuador.

BACKGROUND: Epilepsy is felt to be a stigmatizing condition. Stigma has been considered one of the major factors contributing to the burden of epilepsy and to the treatment gap. Stigma has a negative effect on the management of people with epilepsy (PWE). Furthermore, lack of information and inappropriate beliefs are still the factors that most contribute to stigma and discrimination. In this study, we assessed the level of perceived stigma in urban and rural areas and we report their association with in antiepileptic drug (AED) use, effects on seeking medical care, and stigma-associated factors. METHODS: A cross-sectional study in urban and rural areas in Ecuador from January 2015 until May 2016. People with a confirmed diagnosis of epilepsy were included using three sources of information. The survey was implemented through a questionnaire to determine perceived stigma and evaluate the factors associated. The perceived stigma was measured using the revised Jacoby's stigma scale to detect differences in levels of stigmatization. Access to treatment was evaluated through self-report of AED use, and attainment of medical care and stigma-associated factors were assessed. Furthermore, a multivariate analysis adjusted for possible confounders was performed using stigma as the outcome variable. RESULTS: A total of 243 PWE were interviewed, 65.8% reported feeling stigmatized and 39.1% reported a high stigmatized level. We found a significant difference in high stigma perception in the urban area compared to the rural area. However, the lack of use of AEDs was significantly higher in the rural areas. No significant correlation was found between use of AEDs and the levels of perceived stigma. PWE who did not talk about their condition and those who did not feel well informed about their epilepsy had significantly higher perceived stigma levels. Additionally, the multivariate analysis demonstrated that area, educational level, type of seizure, talk about epilepsy, and information were associated with perceived stigma. CONCLUSION: The stigma perception was relevant in all PWE. We found a higher stigma level perception in the urban compared to rural area. Moreover, the lack of treatment was a serious problem mainly in rural areas. Even though we did not find that perceived stigma was associated with AED use, our study pointed out the influence of educational level and information related to stigmatization. Consequently, a coordinated effort to reduce stigma should include strategies focused on PWE education and information about their condition.

Performance Testing of PCR Assay in Blood Samples for the Diagnosis of Toxoplasmic Encephalitis in AIDS Patients from the French Departments of America and Genetic Diversity of Toxoplasma gondii: A Prospective and Multicentric Study.

BACKGROUND: Toxoplasmic encephalitis in patients with AIDS is a life-threatening disease mostly due to reactivation of Toxoplasma gondii cysts in the brain. The main objective of this study was to evaluate the performance of real-time PCR assay in peripheral blood samples for the diagnosis of toxoplasmic encephalitis in AIDS patients in the French West Indies and Guiana. METHODOLOGY/PRINCIPAL FINDINGS: Adult patients with HIV and suspicion of toxoplasmic encephalitis with start of specific antitoxoplasmic therapy were included in this study during 40 months. The real-time PCR assay targeting the 529 bp repeat region of T. gondii was performed in two different centers for all blood samples. A Neighbor-Joining tree was reconstructed from microsatellite data to examine the relationships between strains from human cases of toxoplasmosis in South America and the Caribbean. A total of 44 cases were validated by a committee of experts, including 36 cases with toxoplasmic encephalitis. The specificity of the PCR assay in blood samples was 100% but the sensitivity was only 25% with moderate agreement between the two centers. Altered level of consciousness and being born in the French West Indies and Guiana were the only two variables that were associated with significantly decreased risk of false negative results with the PCR assay. CONCLUSION/SIGNIFICANCE: Our results showed that PCR sensitivity in blood samples increased with severity of toxoplasmic encephalitis in AIDS patients. Geographic origin of patients was likely to influence PCR sensitivity but there was little evidence that it was caused by differences in T. gondii strains. TRIAL REGISTRATION: ClinicalTrials.gov NCT00803621.

Prevalence of Multiple Sclerosis in the City of Volta Redonda - Rio De Janeiro, Brazil Using the Capture-Recapture Method.

BACKGROUND: Multiple sclerosis (MS) prevalence in Latin America was estimated in some regions and it was found to range from 0.75 to 30/100,000. The reasons for variation in rates of prevalence around the world still are not clear, but there are environmental and genetic explanations to this phenomenon. This study aimed at estimating the MS prevalence in Volta Redonda, Brazil. METHOD: Three sources of cases ascertainment were used and the method of capture-recapture was applied for assessing the corrected prevalence in the city of Volta Redonda in November 2012. The capture-recapture method uses data from incomplete lists and allows calculating the number of unregistered cases. Data were analyzed using a log-linear model. RESULTS: A total of 40 MS cases was found by withdrawing overlaps of sources and it was estimated that a total number of 40 cases (95% CI 13.5-118.8) were not detected by the sources. The corrected prevalence of MS was, then, 30.7/100,000. CONCLUSION: Our study was the first in Brazil to use the capture-recapture method to assess the prevalence of MS, demonstrating the highest prevalence rate so far. It is necessary to perform other similar studies and in other regions of the country using the same method for a better evaluation of the true prevalence of MS our country.

Prevalência de Doenças Neurológicas em Uma Região Rural do Brasil / Frequency of Neurological Diseases in a Rural Region of Brazil

The World Health Organization recommends identifying the most prevalent diseases in each developing country or region to promote the optimal use of health services. Few studies have analysed the prevalence of neurological diseases in developing countries, especially in tropical regions. This study aims to describe neurological syndromes and tropical neurological diseases encountered in the mid-northern Mato Grosso region of Brazil. This study represents a retrospective, descriptive evaluation of the demographic and clinical data of patients 15 years old above living in the region and analyzing information regarding neurological diagnoses identified in the sample. In 2008, 1,402 patients were referred to neurological consultations. The mean age of the adults was 38 years; the study included slightly more women (52.2%) than men. The most common syndromes were headaches (32.2%) and epilepsy (16.3%). No tropical disease was found in our sample, and according to sanitary authorities, the number of related notifications was lower than the expected for a tropical region. The present study is the only study conducted to date in a rural region of Brazil using outpatient evaluations to define the frequency of neurological diseases. The prevalence of tropical diseases in this region is lower than the expected.

A Organização Mundial de Saúde - OMS recomenda a identificação das doenças mais prevalentes nos países ou regiões em desenvolvimento, a fim de promover melhorias direcionadas nos serviços de saúde locais. Poucos estudos analisam prevalência de doenças neurológicas em países em desenvolvimento, especialmente em regiões tropicais. Este artigo descreve síndromes neurológicas e doenças neurológicas tropicais identificadas na região do Médio Norte de Mato Grosso, Brasil. Trata-se de estudo retrospectivo descritivo, analisando dados clínicos e demográficos de pacientes com mais de 15 anos de idade que moram na região, assim como os diagnósticos neurológicos identificadas na amostra. Em 2008,1,402 pacientes foram encaminhados a consulta neurológica, sendo a média de idade de 38 anos com leve predomínio do sexo feminino (52.2%). Síndromes neurológicas mais frequentes foram cefaleia (32.2%) e epilepsia (16.3%). Nenhuma doença neurológica tropical foi identificada na amostra e, de acordo com dados oficiais da vigilância sanitária local, a notificação destas foi abaixo do esperado para uma área de clima tropical. O presente estudo é a única publicação brasileira com dados coletados em área rural no Brasil, utilizando pacientes acompanhados em ambulatório de neurologia, para definir a frequência de doenças neurológicas, que estão abaixo das taxas esperadas para a região.

Newly-diagnosed epileptic seizures in three populations: Geneva (EPIGEN), Martinique (EPIMART), and the Reunion Island (EPIREUN).

AIM: The objective was to analyse and discuss data from three studies of newly-diagnosed epileptic seizures (provoked and unprovoked) conducted in Geneva, Martinique, and the Reunion Island, in which the same methodology was used. METHODS: We extracted data from three studies in which the incidence of seizures was estimated and aetiologies identified. Data was extracted and analysed using STATA. Group comparison was performed firstly for each study as a single group, and secondly by considering Martinique and the Reunion Island as an overseas group, in comparison with Geneva, considered as a mainland group. Uncorrected χ(2)was used and statistical significance (two-sided, p=0.05) was determined for each aetiology per cohort. RESULTSThe incidence of newly-diagnosed epileptic seizures per 100,000 was 71.0, 80.6, and 100.4 in Geneva, Martinique, and the Reunion Island, respectively. A bimodal distribution and predominance of generalised seizures was noted. The male to female ratio was higher in Martinique (∼2.0) than other populations (∼1.5). Status epilepticus was noted in Geneva and more so in the Reunion Island. The incidence of provoked seizures per 100,000 was 25.2, 16.4, and 17.7, and for unprovoked seizures was 45.6, 64.1, and 81.2 in Geneva, Martinique, and the Reunion Island, respectively. There was a greater risk of provoked seizures in Geneva relative to the overseas group, which was due to tumours, use of toxic substances, and drug abuse. The risk of unprovoked seizures in Geneva was due to trauma and infections. In Martinique, alcoholism and HIV were foremost factors for provoked and unprovoked seizures, and stroke was an important aetiology in both Martinique (provoked seizures) and the Reunion Island (unprovoked seizures). CONCLUSION: The risk of provoked seizures was greatest in Geneva and risk of unprovoked seizures was greatest in the Reunion Island. Toxic substances, alcohol, infection, and trauma constituted major factors for epileptic seizures in Geneva, while alcoholism, HIV, and stroke were major factors in the overseas group. Relative eradication of tropical infections has paved a way for the emergence of non-communicable aetiologies (stroke, alcoholism). Males from Martinique demonstrated the greatest risk of epileptic seizures, signifying the importance of alcoholism, HIV, etc. Three steps should follow: follow-up studies (mortality), strong mechanisms for prevention (or control) of risk factors, guidelines on whether to treat or not.

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.

Determining the burden of neurological disorders in populations living in tropical areas: who would be questioned? Lessons from a Mexican rural community.

BACKGROUND: The best approach to determine the burden of neurological disorders in developing countries is to perform population-based studies. Our objectives were to determine the prevalence of neurological disorders in a Mexican rural community and assess the usefulness of a household screening questionnaire. METHODS: The survey took place in a Mexican rural community of Puebla State in Mexico. This was a cross-sectional, population-based, 2-phase study including a comparison of the usefulness levels of the individual (IQ) and household (HQ) questionnaires. RESULTS: A total of 4,008 individuals participated in the prevalence study using the IQ; of these, 280 neurological examinations allowed to identify 127 individuals suffering from at least 1 neurological disease. The most frequent ailments were headache (22.4/1,000, 95% confidence interval, CI: 17.7-28.2), neuropathy (7.1/1,000, CI 95%: 4.4-11.3) and epilepsy (3.9/1,000, CI 95%: 2.3-6.5). The HQ, used in parallel with the IQ, detected significantly fewer neurological cases. This result was mainly due to the low capacity of the HQ to detect headache. CONCLUSIONS: Results of the prevalence study are discussed emphasizing their relevance in adequately allocating resources. The usefulness of the HQ for screening neurological disorders in general was low, but could be adequate for specific neurological disorders.

Prognosis of ALS: comparing data from the Limousin referral centre, France, and a Uruguayan population.

Our objective was to compare clinical features and survival in two groups of ALS patients from countries in opposite hemispheres. The study took place at an ALS referral centre in the Limousin region of France (LIM) and in Uruguay (UY). All consecutive patients diagnosed with ALS between 1 January 2002 and 31 December 2004 were enrolled. Data from a total of 187 ALS patients were analysed: 84 from LIM and 103 from UY. Mean ages at onset and diagnosis were significantly higher in LIM (66 vs. 61 years). UY patients demonstrated more advanced disease at the time of diagnosis. The proportions of definite forms were 82% in UY versus 10% in LIM (p<0.001), and median manual muscle testing (MMT) and ALSFRS scores were significantly lower in LIM. This observed difference was not directly explained by a longer diagnostic delay in UY (10 vs. 9 months). Median survival from time of diagnosis was significantly shorter in UY patients (19 vs. 28 months; log-rank test, p=0.030). In conclusion, survival of ALS patients in UY is nine months shorter than in LIM, probably due to the heterogeneity of medical care and the absence of an ALS referral centre.

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.

Symptomatic human neurocysticercosis--age, sex and exposure factors relating with disease heterogeneity.

OBJECTIVE: To evaluate the relevance of exposure and host biological factors in the heterogeneity of the clinical, radiological and inflammatory picture of neurocysticercosis (NCC). METHODS: 105 Mexican symptomatic NCC patients confirmed by imaging were studied before they received any specific treatment. The relationships studied were those between a) the patients' characteristics (gender, age and level of exposure), b) the type of clinical picture and c) the radiological and inflammatory characteristics of the disease (number, aspect, localization of the parasites, and CSF leukocyte counts). RESULTS: Seizures were the most frequent symptom and multiple subarachnoid cysticerci the most frequent localization. Symptomatology related to the developmental stage, number and localization of the parasites as well as the CSF leukocyte-counts. The total number of cysticercal lesions and of vesicular cysticerci increased with age,whereas the number of colloidal cysticerci decreased. CSF leukocyte-counts were higher in women than in men. Levels of exposure did not correlate with the clinical and radiological pictures. CONCLUSIONS: The variability found in the number, stage, localization and inflammation in the parasite lesions is strongly associated with the heterogeneity of NCC symptoms. The increased number of vesicular cysticerci and the decreased number of degenerating cysticerci with aging, as well as the prominence of inflammation in women suggest that immuno-endocrinological factors may play a role in susceptibility and pathogenesis. The data also show that with increasing age and exposure there is no increment in severity, a suggestion that there might be ways of regulating pathogenicity.