Muerte Súbita en Epilepsia (SUDEP): Encuesta a familiares de pacientes con epilepsia y a profesionales de la salud / Sudden unexpected death in epilepsy (SUDEP): Epilepsy Family and Survey health professionals

Sudden unexpected death in epilepsy (SUDEP), definida como la muerte brusca, inesperada, con o sin testigos, no traumática ni por ahogo, que ocurre en circunstancias benignas, en un individuo con epilepsia, con o sin evidencias de crisis, pero sin estado epiléptico. En general, afecta sobre todo a pacientes con epilepsia refractaria. La incidencia es de 4-7/1000 pacientes al año. En nuestra región, no contamos con muchos datos epidemiológicos de SUDEP, lo cual es un desafío a investigar, ya que sabemos que el 85% de los pacientes con epilepsia viven en países en desarrollo. Es muy importante que los pacientes y/o familiares conozcan sobre SUDEP, ya que ayuda a lograr mejor lo objetivos de tratamiento, promueve mejor el reporte médico-paciente, disminuye ansiedad, filtra la información inadecuada y creencias inapropiadas. Pero es necesario preguntarles a ellos, cuanto saben de SUDEP, cómo, que y cuando recibir esta información. Existen países y culturas donde está vedado hablar de SUDEP. Tampoco conocemos cómo los médicos manejamos el tema, cuando decirlo, que contar y cómo hacerlo. Por otro lado, hay controversias entre los epileptólogos, en qué momento tratar la temática. Por este motivo, se realiza una encuesta a pacientes con epilepsia y/o familiares, además de especialistas médicos. El objetivo es evaluar si los colegas especialistas están hablando del tema y por otro lado constatar los conocimientos de SUDEP en los pacientes y/o familiares. Los resultados de la encuesta, arrojan que la mayoría de los médicos no habla del tema y la mayor parte de los familiares de pacientes con epilepsia desea conocer la temática al inicio de la enfermedad, contada por el médico. Gran número de ellos se ha informado por redes sociales y creen que es prevenible.

Sudden unexpected death in epilepsy (SUDEP), is defined as sudden, unexpected death, with or without witnesses, neither traumatic nor by choking, occurring in benign circumstances in an individual with epilepsy, with or without evidence of crisis, but without epileptic status. In general, it mainly affects patients with refractory epilepsy. The incidence is 4-7/1000 patients per year. In our region, we do not have much epidemiological data about SUDEP, which is a challenge to investigate, as we know that 85% of epilepsy patients live in developing countries. It is important to ask patients and/or family members how much do they know about SUDEP and how as well as when to receive this information. It is important that parents and/or family members know about SUDEP, as it helps to better achieve treat ment goals, better promotes doctor-patient reporting, decreases anxiety, filters inadequate information and inappropriate beliefs. There are countries and cultures where it is forbidden to talk about SUDEP. We also do not know how doctors handle the subject, when to talk about it, what to tell and how to do it. On the other hand, there are controversies among epileptologists at which point to deal with this subject. For this reason, a survey is conducted on parents of children with epilepsy and/or family members, as well as medical specialists. The objective is to be able to evaluate how specialist colleagues are talking about the topic and on the other hand evaluate some parameters of SUDEP in parents and/or family members. Most doctors do not talk about it and most relatives of epilepsy patients want to know the topic of the onset of the disease form their doctor. Large numbers of them have gathered information on SUDEP through social networks and believe it is preventable.

Epilepsia y pandemia por COVID-19: recomendaciones para un manejo integral / Epilepsy and pandemic by COVID-19: recommendations for an integral management

La pandemia de COVID-19, nos ha enfrentado una situación de emergencia que ha impactado múltiples aspectos de la vida diaria y además dificultades asociadas al manejo de las enfermedades crónicas como la epilepsia, en la cual la adherencia al tratamiento, los costos y las comorbilidades, juegan un rol importante. También el personal que trabaja o que atiende a los pacientes con epilepsia, su entorno y familiares han debido modificar su accionar. Hay pacientes, que han mejorado el control de sus crisis por diferentes motivos y otros en cambio, han empeorado y además han evolucionado con mayor ansiedad. El objetivo de este artículo es revisar diferentes elementos a considerar en el manejo de las epilepsias en el contexto de la pandemia por COVID-19.

The COVID-19 pandemic has faced us with an emergency situation that has impacted multiple aspects of daily life and also difficulties associated with the management of chronic diseases such as epilepsy, in which adherence to treatment, costs and comorbidities, play an important role. Also, the staff who work with or care for patients with epilepsy, their environment and family members have had to modify their actions. There are patients, who have improved the control of their seizures for different reasons while others have worsened and have also presented with greater anxiety. The objective of this article is to review different elements to consider in the management of epilepsy in the context of the Pandemic by COVID-19.

La relación interpersonal terapéutica en el acercamiento a personas con epilepsia y depresión / The interpersonal therapeutic relationship in approaching people with epilepsy and depression

INTRODUCCIÓN: Los trastornos mentales, como La depresión, pueden estar presentes en la vida de las personas con epilepsia, acompañados de aislamiento, dificultades com El estudio y El trabajo, así como El riesgo de suicidio. OBJETIVO: identificar síntomas sugestivos de depresión en personas con epilepsia y sus cuidadores. MÉTODO: entrevistas realizadas por una enfermera que utilizó el enfoque de relación terapéutica. Al final de La recopilación de datos, el entrevistador dijo: "¿Hay algo más que le gustaría que supiéramos? "Aprobado por el Comité de Ética. RESULTADOS: de los 75 sujetos, 49 eran personas con epilepsia y 26 eran cuidadores. Los sujetos informaron intento de suicidio (25%) y bajo riesgo de consumo de alcohol (100%). Informó el uso de drogas ilícitas como el crack y la cocaína e dependencia nicotínica. Las personas con depresión y epilepsia representan el 36% y el 66% tenían síntomas indicativos de ansiedad. Los cuidadores informaron que el 81% de las NP dependen de su cuidado. El 88.5% de los cuidadores informaron sobrecarga para el cuidado de la EP (50% moderado y 27% moderado a severo). CONCLUSIONES: El tipo de enfoque para recopilar datos de investigación, en forma de interacción de ayuda, contribuyó a promover un entorno terapéutico, expandió la escucha de enfermería calificada con el manejo de situaciones de crisis y sus consecuencias. La relación interpersonal califica la atención de enfermería en salud mental para personas con epilepsia. Las técnicas de enfoque interpersonal facilitan el uso de procedimientos de recopilación de datos de investigación.

INTRODUCTION: Mental disorders, suchas depression, may be present in the lives of people with epilepsy, accompanied by isolation, difficulties with study and work, as well as the risk of suicide. OBJECTIVE: to identify symptoms suggestive of depression in people with epilepsy and their caregivers, in interviews conducted by the nurse who used the therapeutic relationship approach. Material and METHOD: During the collection of the data on depressive symptoms, the interviewer gave them the opportunity to speak freely about their problems, welcoming and guiding their doubts. Project approved by the Ethics Committee. RESULTS: Of the 75 subjects, 49 were people with epilepsy and 26 were their caregivers. Subjects reported suicide attempt (25%) and low risk of alcohol consumption (100%). They will also inform the use of illicit drugs such as crack and cocaine and nicotinic dependence. People with depression and epilepsy represent 36% and 66% had symptoms indicative of anxiety. Caregivers reported that 81% of epileptics depend on their care. 88.5% ofcaregivers reported overload for caring for people with epilepsy (50% moderate and 27% moderate to severe). CONCLUSIONS:This approach to collecting research data, in the form of help interaction, contributed to promoting a therapeutic environment, expanded skilled listening with the management of crisis situations and their consequences. The interpersonal relationship qualifies mental health nursing care for people with epilepsy and facilitates the use of research data collection procedures.

Impact of caregiver burden on health-related quality of life and family functioning of carers of children with epilepsy at the Charlotte Maxeke Johannesburg Academic Hospital, South Africa

Background. The impact of caring for a child with a chronic disease on caregivers and their family functioning contributes to the child's adaptation to the disease.Objectives. To determine the impact of caregiver burden on the health-related quality of life (HRQOL) and family functioning of carers of children with epilepsy (CWE), and to determine factors associated with a high impact of caregiver burden.Method. A cross-sectional study was conducted among primary caregivers of CWE attending the Charlotte Maxeke Johannesburg Academic Hospital, South Africa. Participants had been involved in childcare for at least 6 months before study enrolment and all gave informed consent. Data regarding sociodemographic and epilepsy-related variables were obtained from questionnaires, including the 36-item family impact module of the Pediatric Quality of Life assessment tool. Scores in the lower quartile were considered indicative of a negative impact on HRQOL and poor family functioning.Results. Participants identified as experiencing a high impact of paediatric epilepsy care reported raw scores ≤31.3 for both caregiver burden and family functioning. The family functioning score correlated strongly with the caregivers' HRQOL score (p=0.78; p<0.001). Multivariate analysis identified a low level of education among caregivers and a high seizure frequency in patients as independent predictors of caregiver burden associated with a negative impact.Conclusion. Our findings suggest that the burden of caregiving in paediatric epilepsy among our study population impacts negatively on family functioning. The burden of care was associated with a low level of caregiver education and a high seizure frequency in their children

Crianças com epilepsia: percepção e vivência de famílias / Children with epilepsy: perception and living of families / Niños con epilepsia: percepción y vivencia de familias

Objetivo: descrever a percepção e a vivência de famílias de crianças com epilepsia. Método: Estudo descritivo de caráter qualitativo, realizado no município de Guarapuava/PR. Os dados foram coletados nos meses de janeiro e fevereiro de 2016, por meio de entrevistas semiestruturadas realizadas junto a sete familiares de crianças com epilepsia. Os relatos foram transcritos e submetidos à análise categorial temática. Resultados: Os resultados ressaltam o impacto social da doença na família, desde o momento do diagnóstico, com implicações para desenvolvimento de atitudes de superproteção, até mudanças na dinâmica familiar, além do enfrentamento do estigma da doença. Conclusão: O desvelamento da percepção e da vivência de famílias de crianças com epilepsia permitiu verificar em que medida estas influenciam o cuidado dispensado a elas, ao mesmo tempo em que ressalta a importância do apoio a estas famílias no cuidado, por meio de uma assistência humanizada e qualificada, pautada nas reais necessidades de cada unidade familiar

Objective: to describe the perception and the experience of families composed by children with epilepsy. Method: Descriptive study of a qualitative character, carried out in the city of Guarapuava-PR. The data were collected in the month of January and February of 2016, by means of a semi-structured instrument, it was obtained participation of 7 relatives of children with epilepsy. The reports were transcribed and submitted to the Analysis of thematic content modality. Results: they call attention to the social impact of the disease in the family, from the moment of diagnosis, with implications for the development of attitudes of overprotection, to changes in family dynamics, and the stigma of epilepsy. Conclusion: understanding the perception and the experience of families, reveals that this may influence the care of the child with epilepsy. In addition, it denotes the importance of supporting the family in care, with an assistance based on the real needs of the family and therefore, more humanized and qualified

Objetivo: describir la percepción y la vivencia de famílias compuestas por niños con epilepsia. Método: Estudio descriptivo de carácter cualitativo, realizado em El municipio de Guarapuava-PR. Los datos fueron recolectados em El mes de enero y febrero de 2016, por medio de instrumento semi estructurado, se obtuvo La participación de 7 familiares de niños con epilepsia. Los relatos fueron trascritos y sometidos al analise de Contenido modalidad temática. Resultados: llaman La atención sobre el impacto social de La enfermedad em La familia, desde el momento del diagnóstico, com implicaciones para el desarrollo de actitudes de sobre protección, hasta los câmbios ocurridos em La dinámica familiar, además del estigma de la epilepsia. Conclusión: La comprensión de La percepción y la vivencia de lãs familias, revela que ésta puede influir em el cuidado delniño con epilepsia. Además denota La importancia de apoyar a La família enel cuidado, con una asistencia pautada em lãs reales necesidades de La familia y por lo tanto, más humanizada y calificada

Translation of social and occupational functioning scale for epilepsy into Portuguese - Brazil / Tradução da escala de funcionamento ocupacional e social para pessoas com epilepsia para português - Brasil

ABSTRACT Epilepsy has important consequences on functionality and social activities. There are few evaluation tools for this purpose. This study aimed to translate the Social and Occupational Functioning Scale for Epilepsy. It is a translation study, for which Beaton et al's. guidelines were used. Sixty patients over 18 years of age, with a confirmed diagnosis of epilepsy, were evaluated. The analysis of internal consistency (Cronbach's alpha) showed values between 0.55 and 0.72 associated with the original dimensions of the instrument, while the five dimensions identified by the results of an exploratory factor analysis showed values between 0.60 and 0.68, with different grouping of the structures of the original scale. Respondents had no difficulty answering the translated version of the Social and Occupational Functioning Scale for Epilepsy, but the statistics show the need for cultural adaptation to the Brazilian population.

RESUMO A epilepsia traz importantes consequências na funcionalidade e nas atividades sociais. São escassos os instrumentos de avaliação para esta finalidade. Este estudo tem por objetivo realizar a tradução da Escala de Funcionamento Social e Ocupacional para Epilepsia - SOFSE. É um estudo de tradução, para o qual foram utilizadas as diretrizes de Beaton et al. (2000). Foram avaliados 60 sujeitos, acima de 18 anos com diagnóstico confirmado de epilepsia. A análise da consistência interna (alpha de Cronbach) apresentou valores entre 0,55 e 0,72 associados às dimensões originais do instrumento, enquanto as cinco dimensões identificadas pelos resultados de uma análise fatorial exploratória apresentaram valores entre 0,60 e 0,68, com agrupamento diferente da estrutura da escala original. Os entrevistados não apresentaram dificuldade para responder a versão traduzida da SOFSE, mas os resultados estatísticos mostram a necessidade de uma adaptação cultural para a população brasileira.

Comorbilidad psiquiátrica en niños con epilepsia benigna de la infancia / Psychiatric comorbidity in children with benign childhood epilepsy

La epilepsia es una enfermedad crónica que en ocasiones puede afectar el funcionamiento emocional, cognitivo y lingüístico del niño e impactar en su funcionamiento intra-psíquico e interpersonal incluyendo a su familia y al medio académico y social. Si bien en el ámbito internacional se han realizado numerosos estudios que han podido demostrar que muchos niños con epilepsia ven afectadas sus funciones mentales, sus emociones y conducta, muy pocas investigaciones se propusieron explorar la relación existente entre psicopatología y tipo de epilepsia. Es frecuente que la epilepsia se acompañe de síntomas y cuadros psicológicos y psiquiátricos, causados ya sea por los efectos neurofisiológicos de la misma enfermedad, como consecuencia de las condiciones de vida que la enfermedad impone, por las características constitucionales de los sujetos, por la dinámica que se establece en el plano familiar y también como efectos adversos de la medicación. El predominio de problemas del comportamiento en niños con epilepsia se muestra dos veces superior al considerado en niños con enfermedades crónicas que no implican el SNC y cuatro veces superior al de niños sanos. Estudios más recientes señalan la presencia de disturbios del comportamiento en 21-32% de niños con epilepsia usando la lista de comprobación del comportamiento del niño, en 23-26% con el inventario de la depresión del niño, en el 48% con la escala de Rutter. Es objetivo de esta investigación, determinar la distribución de los trastornos mentales asociados a epilepsia benigna de la infancia en un grupo de pacientes de entre 6 y 13 años y comparar esta distribución con la de un grupo de niños de entre 6 y 13 años de la población escolar general (AU)

Epilepsy is a chronic disease that may affect emotional, cognitive, and linguistic, as well as inter-psychic and intrapersonal functioning including the family and academic and social environments. Although numerous international studies have been conducted showing that in children with epilepsy cognitive function, emotions, and behavior are often impaired, few investigations have proposed to assess the correlation between psychopathology and type of epilepsy. Epilepsy is commonly associated with psychological and psychiatric features caused either by the neurophysiological effects of the disease or by the conditions of life related to the disease, due to constitutional characteristics of the patients, family dynamics, and adverse effects of the antiepileptic drugs. Predominance of behavioral difficulties of children with epilepsy are two-fold higher than in children with other chronic diseases not involving the CNS and four-fold higher than in healthy children. More recent studies have found the presence of behavioral disturbances in 21-32% of children with epilepsy using a checklist of child behavior, with the Child Depression Inventory in 23-26% and the Rutter Scale in 48%. The aim of this study was to determine the distribution of mental disorders associated with benign childhood epilepsy in a group of patients between 6 and 13 years of age compared with that in a group of children between 6 and 13 years of age from the general school-age population (AU)

El impacto familiar en pacientes con epilepsia benigna de la infancia / Family impact on children with benign childhood epilepsy

La epilepsia constituye un factor de estrés en la vida del niño y su familia. Ambos deben desarrollar estrategias de afrontamiento dentro de un sistema que incluye al niño, a su familia y al entorno social, educativo y médico, y que no siempre resultan adaptativas. Si bien en el ámbito internacional se han realizado numerosos estudios que han podido demostrar que muchos niños con epilepsia ven afectadas sus funciones mentales, sus emociones y conducta; muy pocas investigaciones se propusieron explorar la relación existente entre psicopatología y tipo de epilepsia. En el caso de la Epilepsia Benigna de la Infancia (E.B.I.), no se dispone información sistemática que permita esclarecer su relación con trastornos psicopatológicos en niños, ni tampoco la repercusión de la enfermedad en la familia. El impacto que los trastornos epilépticos pueden tener sobre la vida del niño y su familia es un dato de observación clínica hallado en forma frecuente, durante el seguimiento de estos pacientes. Es común encontrar que muchos padres de niños epilépticos se vuelven sobreprotectores, restringiendo la actividad del niño y su autonomía. La falta de exposición a situaciones sociales así como una disminución de las expectativas y demandas hacia estos niños pueden dificultar el desarrollo de herramientas adecuadas de interacción social, lo cual repercute negativamente en la autoestima. En algunas ocasiones el status que asume el paciente en esta situación lo limita más aún que la propia epilepsia. Varios estudios han demostrado que el funcionamiento familiar es un poderoso predictor del funcionamiento psicológico en niños con enfermedades crónicas. Este trabajo se propone conocer el impacto de la enfermedad en el grupo de pacientes con epilepsia benigna de la infancia (AU)

Epilepsy is a factor of stress for the child and his or her family. Both need to develop coping strategies within a system that includes the child, the family, and the social, educational, and medical environment, which do not always adapt to the situation. Although multiple international studies have been conducted showing that in many children with epilepsy cognitive function, emotion, and behavior are affected, few studies have evaluated the association between psychopathology and type of epilepsy. In benign childhood epilepsy (BCI) there are no systematic data to clarify its association with psychopathological disorders in children or the impact of the disease on the family. The impact these epileptic disorders have on the life of the child and their family is an often observed clinical finding in the follow-up of these patients. The parents of children with epilepsy often become overprotective, limiting the activities and autonomy of the child. The lack of exposure in social settings as well as decreased expectations and demands from the parents affect the development of adequate social interaction tools with a negative impact on self-esteem. The latter of which may limit the patient more than the epilepsy itself. Several studies have shown that family functioning is a powerful predictor of psychological performance of children with chronic diseases. The aim of the present study was to evaluate the impact of the disease in a cohort of patients with BCE (AU)

A pessoa com epilepsia: percepções acerca da doença e implicações na qualidade de vida / The individual with epilepsy: perceptions about the disease and implications on quality of life

RESUMO Objetivo Analisar percepções de pessoas com epilepsia acerca da doença e seu impacto na qualidade de vida. Método Trata-se de um estudo qualitativo e quantitativo de corte transversal realizado em hospital de referência terciária, vinculado ao Sistema Único de Saúde. Participaram do estudo 30 pessoas com o diagnóstico de epilepsia de lobo temporal refratária. Foi aplicado questionário para a coleta dos dados sociodemográficos e clínicos, bem como das percepções acerca da doença. Avaliou-se a qualidade de vida por meio do Subjective Handicap of Epilepsye e o estigma pela Escala Estigma na Epilepsia. Resultados Foi encontrada significância na relação entre estigma e qualidade de vida com os domínios trabalho e social/pessoal, entre estigma e percepções sobre a epilepsia. As respostas fornecidas pelos participantes foram organizadas em quatro categorias: definições e causas; crises e tratamento; impacto familiar e social; impacto na vida das pessoas. Conclusão Evidenciou-se o predomínio do conhecimento restrito dos participantes acerca da epilepsia e o impacto negativo que o estigma relacionado a tal doença acarreta na qualidade de vida. Pode-se verificar que a qualidade de vida e o estigma estão diretamente relacionados ao conhecimento dos participantes sobre a epilepsia. Ressalta-se a necessidade do implemento de programas e ações que objetivem: proporcionar maior conhecimento sobre a epilepsia por parte do paciente e de seus familiares; favorecer a comunicação entre os profissionais de saúde e as PCEs; promover a participação do paciente e de seus familiares na gestão do tratamento.

ABSTRACT Purpose The present study aims to analyze the perceptions of individuals with epilepsy about the disease and its impact in their quality of life (QoL). Methods This is a cross-sectional, qualitative and quantitative study conducted in a tertiary referral hospital associated with the Brazilian National Health System (SUS). Data were collected from 30 individuals with diagnosis of refractory temporal lobe epilepsy (RTLE). The study participants responded to a questionnaire to collect sociodemographic and clinical data, as well as their perceptions about the disease. QoL was assessed by the Subjective Handicap of Epilepsy (SHE) and the Stigma Scale of Epilepsy (SSE). Results Significant correlation was found between stigma and quality of life and the work and activity and social and personal life domains, as well as between stigma and perceptions about epilepsy. The responses provided by the participants were organized into four categories: definitions and causes, seizures and treatment, family and social impacts, and impact on individuals’ lives. Conclusion The results show that participants have limited knowledge about epilepsy and that there is a negative impact caused by the stigma related to this disease on their QoL. It was possible to verify that QoL and stigma are directly related to the understanding of participants about epilepsy. Therefore, it is important to implement programs and actions that aim to provide patients and their families with more comprehensive knowledge about epilepsy; promote communication between health professionals and patients; and encourage the participation of patients and their families during treatment.

Validity and reliability evidence of the questionnaire for illness representation, the impact of epilepsy, and stigma (QIRIS) / Evidências de validade e confiabilidade do questionário de representação da doença, impacto da epilepsia e estigma (QIRIS)

ABSTRACT The objective of this study was to obtain reliability and validity evidence for the questionnaire of illness representation, the impact of epilepsy, and stigma (QIRIS) for use with adolescents and adults in Brazil. QIRIS consists of 14 questions grouped in three domains (attribution of meaning, impact of disease, and stigma) and was applied to 57 adults with epilepsy. QIRIS internal consistency was satisfactory (Cronbach’s α = 0. 866). Significant and strong correlation was found between issues belonging to the same domain, as expected. Three domains have highly significant and positive correlations with the instrument’s total score, indicating evidence of content validity. We conclude that QIRIS has psychometric properties and can facilitate a systematic evaluation of the patient’s representation according to a biopsychosocial approach that may contribute to clinical practice based on scientific evidence.

RESUMO Este estudo buscou evidências de confiabilidade e validade para o questionário de representação da doença, impacto da epilepsia e estigma (QIRIS), para uso em adolescentes e adultos no Brasil. O QIRIS consiste de 14 questões agrupadas em 3 domínios (atribuição de significados, impacto da doença e estigma) e foi aplicado em 57 adultos com epilepsia. A consistência interna do QIRIS foi satisfatória (α de Cronbach = 0,866). Foi encontrada forte e significante correlação entre as questões com o mesmo domínio.Os três domínios têm correlações altamente significativas e positivas com a pontuação total do instrumento, indicando evidências de validade de conteúdo. Concluímos que o QIRIS tem propriedades psicométricas que facilitam uma avaliação sistemática de representação do paciente de acordo com uma abordagem biopsicossocial, além de contribuir para uma prática clínica baseada em evidências científicas.

Dissociative experiences in patients with epilepsy / Experiências dissociativas em pacientes com epilepsia

ABSTRACT A few studies have explored dissociative experiences in epilepsy patients. We investigated dissociative experiences in patients with epilepsy using the dissociative experiences scale (DES). Ninety-eight patients with epilepsy and sixty healthy controls were enrolled in this study. A sociodemographic questionnaire and the Dissociative Experiences Scale (DES), Beck Depression Inventory (BDI) and Beck Anxiety Inventory (BAI) were administered to the participants. The DES scores were significantly higher for the patients with epilepsy than the healthy individuals. The number of individuals with pathological dissociation (DES ≥ 30) was higher in the epilepsy group (n = 28) than in the control group (n = 8). Also, higher levels of dissociation were significantly associated with frequency of seizures, but were not associated with duration of epilepsy and age at onset of the disorder. These findings demonstrate that patients with epilepsy are more prone to dissociation than controls. The high rate of dissociative experiences among patients with epilepsy suggest that some epilepsy-related factors are present.

RESUMO Poucos estudos exploraram as experiências dissociativas em pacientes com epilepsia. Investigamos as experiências dissociativas em pacientes com epilepsia através da Escala de Experiências Dissociativas (EED). Noventa e oito pacientes com epilepsia e 60 controles saudáveis foram incluídos neste estudo. Um questionário sócio-demográfico, a EED, o Beck Depression Inventory (BDI) e o Beck Anxiety Inventory (BAI) foram administrados aos participantes. Os valores de EED foram significativamente maiores nos pacientes com epilepsia em relação aos controles saudáveis. O número de indivíduos com doença dissociativa (EED ≥ 30) foi maior no grupo de epilepsia (n = 28) todo que no grupo controle (n = 8). Além disto, altos níveis de dissociação estavam associados à frequência de crises epilépticas, mas não à duração da epilepsia ou idade de início da doença. Estes achados demonstram que pacientes com epilepsia são maus susceptíveis à dissociação do que os controles. O alto índice de experiências dissociativas entre os pacientes com epilepsia sugere que alguns fatores específicos da epilepsia possam estar relacionados aos achados.

Sleep quality and quality of life in patients with epilepsy in a public teaching hospital in Rio de Janeiro, Brazil / Qualidade de sono e qualidade de vida em pacientes com epilepsia em um hospital público de ensino no Rio de Janeiro, Brasil

The main aim of this paper was to estimate the prevalence of the "bad sleepers", correlate the "sleep quality" with the quality of life, and to study the risk factors for "sleep quality" in 98 unselected adult patients with epilepsy in a cross-sectional study performed in a public teaching hospital. They answered/were evaluated: clinical-socio demographics questions, Pittsburg Sleep Quality Index, Depression and Anxiety Beck Inventories, and SF-36 Health Survey. They were found a high rate of "bad sleepers"; statistically significant difference between "sleep quality" in relation to age, depression and anxiety symptoms, and three SF-36 concepts (physical role, vitality, and mental health). After multiple linear regression analysis, it was found that vitality and anxiety, besides mental health, were the predictors of lower quality of life in "bad sleepers". However, there was not any statistically significant difference regarding seizure frequency, nor number of antiepileptic drugs. Consequently, risk factors for low "sleep quality" have to be managed.

O principal objetivo deste trabalho foi estimar a prevalência dos "maus dormidores", correlacionar a "qualidade do sono" com a qualidade de vida e estudar os fatores de risco para "qualidade do sono" em 98 pacientes adultos não selecionados com epilepsia em um estudo transversal realizado em um hospital público de ensino. Eles responderam/foram avaliados: questões clínicas e sociodemográficas, Índice de Pittsburg de Qualidade de Sono, Inventários de Beck de depressão e ansiedade e Questionário de Qualidade de Vida SF-36. Foram encontradas alta taxa de "maus dormidores"; diferença estatisticamente significativa entre "qualidade do sono" e idade, sintomas de depressão e ansiedade, além de três conceitos do SF-36 (papel físico, vitalidade e saúde mental). Após análise por regressão linear múltipla, encontrou-se que a vitalidade e a ansiedade, além da saúde mental, foram preditores de baixa qualidade de vida nos "maus dormidores". No entanto, não houve qualquer diferença estatisticamente significativa em relação à frequência de crises, nem número de drogas antiepilépticas. Consequentemente, fatores de risco para baixa "qualidade do sono" têm de ser controlados.

The social context and the need of information from patients with epilepsy: evaluating a tertiary referral service / O contexto social e a necessidade de informações de pacientes com epilepsia: avaliando um serviço terciário de referência

Objective Characterize the social profile and the need of information from patients with refractory epilepsy. Method A semi-structured questionnaire was applied to 103 patients to investigate sociodemographic aspects, pharmacotherapy and any doubts about epilepsy. Results Patients were highly dependent on having a free and accessible supply of antiepileptic drugs. Sixty-eight percent of the population was unemployed, and 26% confirmed receiving social security benefits due to epilepsy. Twenty-nine percent of the population reached high school. Eighty-five percent of the patients had at least one doubt about epilepsy; treatment and epilepsy aspects in general were the main topics. Conclusion : As observed in developed countries, patients with refractory epilepsy from a developing country also have high rates of unemployment and low educational levels. The results raise a concern about the need of information about epilepsy by patients and their families, urging the necessity to invest in strategies to solve this deficiency in knowledge. .

Objetivo : Caracterizar o perfil social e a necessidade de informações por parte de pacientes com epilepsia refratária. Método Um questionário semi-estruturado foi aplicado a 103 pacientes para investigar aspectos sociodemográficos, farmacoterapia e quaisquer dúvidas sobre epilepsia. Resultados Os pacientes mostraram-se altamente dependentes de um fornecimento gratuito e acessível de drogas antiepilépticas. Sessenta e oito por cento da população estava desempregada, e 26% confirmaram receber algum benefício social devido à epilepsia. Vinte e nove por cento da população alcançou ensino médio. Oitenta e cinco por cento dos pacientes tinha ao menos uma dúvida sobre epilepsia; tratamento e aspectos gerais da epilepsia foram os principais temas. Conclusão Tal qual observado em países desenvolvidos, pacientes com epilepsia refratária em países em desenvolvimento também apresentam altas taxas de desemprego e baixos níveis educacionais. Os resultados são preocupantes no que diz respeito à necessidade de informações sobre epilepsia por parte dos pacientes e seus familiares, apontando a necessidade de se investir em estratégias que solucionem esta deficiência de conhecimento. .

Calidad de vida del paciente con epilepsia. Instituto Nacional de Ciencias Neurológicas junio 2006 - diciembre 2007 / Quality of life of the patients with epilepsy. National Institute of Neurological Sciences, June 2006 - December 2007

La epilepsia es un problema de salud pública en toda Latinoamérica, no siendo el Perú ajeno a la existencia de un gran número de casos. El impacto de esta enfermedad en el ámbito cultural y socioeconómico es importante para el desarrollo de la vida del paciente con epilepsia, siendo necesario el conocimiento de su estándar de vida, en base a lo cual se determinarán las recomendaciones específicas destinadas al mejoramiento del nivel de vida. Objetivo General: Determinar la calidad de vida del paciente con epilepsia que acude al Instituto Nacional de Ciencias Neurológicas entre Junio 2006 y Diciembre 2007. Específicos: a) Determinar el nivel de bienestar físico, b) Determinar el nivel de bienestar psicológico, y c) Determinar el nivel de bienestar social del paciente con epilepsia. Material y método: Estudio de tipo no experimental, observacional, descriptivo, transversal, y retrospectivo. Muestreo no probabilístico. Aplicación del instrumento QOLIE-31 a un total de 120 pacientes admitidos al departamento de epilepsia en el servicio de consultorio externo. Resultados: El mayor número de pacientes correspondía al sexo masculino (57 por ciento), estando la mayoría en el grupo etario: 18-30 años (63 por ciento), tiempo de evolución menor de 10 años (63 por ciento), epilepsia sintomática (76 por ciento), y patrón de presentación de crisis epilépticas: mayor de 1 crisis por semana a 1 crisis al mes (38 por ciento). El 62 por ciento se hallaba en monoterapia antiepiléptica de primera línea. El puntaje global del QOLIE-31 en esta muestra fue de 50.08, bajo en comparación con otras poblaciones estudiadas. En relación a las tres dimensiones de la calidad de vida se evidenció la siguiente puntuación: bienestar físico: sensación de energía o fatiga (6.89) y efectos de la farmacoterapia (1.98); psicológico: preocupación por las crisis (2.83), valoración global de la calidad de vida (8.72), bienestar emocional (6.62), y funciones cognitivas (11.67)...

Rationale Epilepsy is a public health problem in Latin America, and is considered to be a debilitating illness with impaired quality of life (QoL). This study was conducted with the aim to evaluate QoL in a cohort of individuals with epilepsy attending outpatient clinics at the Instituto Nacional de Ciencias Neurológicas (INCN) in Lima, Peru. Methods: We included consecutively patients seen in the outpatient epilepsy clinics at the INCN, between June 2006 and December of 2007. All patients were administered the Quality of Life in Epilepsy Inventory-31, already validated in Spanish. Results: Most of the patients in this cohort were males (57 per cent), most of them were between 18 and 30 years of age (63 per cent), with a 10 year history of epilepsy (63 per cent), diagnosed with symptomatic epilepsy (76 per cent), and with frequent seizures (1 per week to 1 per month, 38 per cent). Most patients (62 per cent) were on monotherapy. The mean score was 50.08 (48 in the female and 52 in the male group). The lowest scores were related to concern about seizures (2.83) and effects of pharmacological treatment (1.98). These scores were particularly seen in those with long history of epilepsy (longer than 10 years). Event though, in younger patients the lowest scores were seen in regards to concern about seizures and emotional behavior, the older patients scored lower in social relationships and emotional behavior. In terms of work, those without family support scored lower than those with it, and the areas that were most affected were the global quality of life, effects of pharmacotherapy, and concerns about seizures. Furthermore, lowest scores were seen in patients with symptomatic epilepsy and with frequent seizures (more than one seizure per week). The validity of the QOLIE-31 was found to be high (Cronbach's alpha=0.74). Conclusions: This preliminary study reveals a low QOL in Peruvian patients attending outpatient clinics at the INCN in Lima. The most compromised...

Epilepsia infanto-juvenil y comorbilidad neurocognitiva: Impacto de la atención, memoria y procesos ejecutivos del lenguaje / Childhood epilepsy and neurocognitive comorbidity: Impact on attention, memory, and executive language processing

El objetivo del trabajo es profundizar en el conocimiento de procesos atencionales mnésicos y ejecutivos en pacientes con epilepsia. Comparados con un grupo control de similar edad y nivel educativo se encontraron diferencias significativas en atención, memoria, funciones ejecutivas y lenguaje. Entre epilepsias generalizadas y parciales no hubo diferencias. Los déficits encontrados impactan sobre el área académica. Es por tanto necesario implementar adecuaciones pedagógicas que modulen los contenidos académicos (AU)

The aim of this study was to enhance our knowledge on new attentional numerical and executive processes in patients with epilepsy. Compared to an age- and education-matched control group, significant differences in attention, memory, executive functions, and language development were observed. No differences were found between generalized and partial epilepsies. These deficits have an impact on academic performance. Therefore it is necessary to tailor educational therapy modulating the academic contents (AU)

Estado de la información acerca del paciente epiléptico y su inserción social en Cuba / State of information about the epileptic patient and its social integration in Cuba

Introducción: los problemas más relevantes relacionados con los aspectos psicosociales de la epilepsia están vinculados a las creencias erróneas que existen a nivel mundial sobre las limitantes propias de la enfermedad, que afectan a las personas que la padecen. Objetivo: realizar una aproximación al estado actual del tema sobre la inserción social del paciente epiléptico en Cuba, en los últimos 12 años. Métodos: se revisaron 3 794 artículos publicados entre 2000 y 2012 en seis revistas médicas cubanas certificadas, en las bases de datos SciELO y CUMED. La selección se basó en su frecuencia de publicación y la calidad de sus artículos. La estrategia de búsqueda se realizó con los descriptores: epilepsia, paciente epiléptico, inserción social, sociedad, trastornos psicosociales y tratamiento. Síntesis de la información: del total de trabajos revisados solo 29 eran de epilepsia, de ellos, 14 trataban el tema de la inserción social del paciente epiléptico y 15 abordaban aspectos de su atención médica. En estos últimos, se aboga fundamentalmente, por el aumento de la calidad vida en este paciente desde el paradigma clínico y hacen escasa o ninguna referencia a su atención desde el paradigma psicológico salubrista que permite comprobar los niveles de adaptación psicosocial en el enfermo. Conclusiones: las evidencias encontradas apuntan a una escasa divulgación de artículos que traten el tema de la inserción social del paciente epiléptico desde el enfoque psicológico salubrista, que debería considerarse componente activo del tratamiento general(AU)

Introduction: the most relevant problems related to psychosocial aspects of epilepsy lie in wrong beliefs worldwide on the restrictions inherent to this disease that affect the people suffering it. Objective: to approach the current state of information about the social integration of the epileptic patient in Cuba in the last 12 years. Methods: a review of 3 794 articles published from 2000 to 2012 in six Cuban recognized medical journals and in SciELO and CUMED databases. The selection of journals took into consideration frequency of publication and quality of articles. The search subject headings were epilepsy, epileptic patient, social involvement, society, psychosocial disorders and treatment. Data synthesis: of the total number of articles, just 29 dealt with epilepsy, 14 of them with the social involvement of the epileptic patient and 15 addressed medical care. The latter fundamentally advocates the improvement in the quality of life of these patients from the clinical viewpoint but little or no reference was made to their care from the psychological and health approach that allows verifying the level of psychosocial adjustment in this patient. Conclusions: the evidence reveals poor dissemination of articles dealing with the topic of social integration of the epileptic patient from a psychological health care approach that should be regarded an active element of the general treatment(AU)

Calidad de vida en pacientes con epilepsia refractaria controlados en un policlínico especializado en un hospital pediátrico / Quality of life in patients with refractory epilepsy controlled a polyclinic specializing in a pediatric hospital

Introducción: La epilepsia afecta la calidad de vida, tanto por la frecuencia de crisis como por factores relacionados a la atención, tratamiento, complicaciones, etc. Existen escalas para evaluación de este parámetro, como Encuesta de Calidad de Vida del niño con Epilepsia (CAVE). Objetivos: Evaluar calidad de vida en niños con Epilepsia Refractaria (ER), controlados en policlínico especializado. Determinar si atención en este policlínico mejora significativamente calidad de vida. Métodos: Se reclutaron pacientes de 0 a 18 años con ER, controlados en policlínico especializado, se aplicó encuesta CAVE en 2 oportunidades. Resultados: De los 35 pacientes, en la primera evaluación, 27 asistían al colegio, 20 presentaban autonomía catalogada como muy mala o mala, 20 evaluaban percepción de frecuencia de crisis como muy mala y mala, contrastando con opinión general de calidad de vida, donde 22 puntuaron en buena o muy buena. Al seguimiento, 2 iniciaron asistencia escolar, con mejoría significativa en percepción de intensidad de crisis, sin diferencias en otros ítems. Discusión: Se evaluó impacto de una intervención (policlínico especializado) en calidad de vida en ER mostrando una mejoría estadísticamente significativa solo en el parámetro percepción de intensidad de crisis, siendo necesario seguimiento a más largo plazo.

Introduction: Epilepsy affects the quality of life, both in seizure frequency as factors related to care, treatment, complications, etc. There are scales to evaluate this parameter, like Quality of Life in Children with Epilepsy (CAVE). Objectives: To evaluate quality of Life in children with Refractory Epilepsy (RE), controlled in a specialized polyclinic. To determine whether this specialized polyclinic care significantly improves quality of life. Patients and Methods: Patients were recruited from 0 to 18 years, with ER and in control in specialized polyclinic. They were surveyed with CAVE on 2 occasions in an 11 month period. Results: Of the 35 patients in the first evaluation, 27 were attending to school, 20 had self-classified as poor or very poor, 20 assessed perceived frequency of seizures as very bad and poor, in contrast to general opinion of quality of life, where 22 rated in good or very good. Monitoring, 2 began scholar assistance, with significant improvement in perceived intensity of crisis, no differences in other items. Discussion: We evaluate the impact of an intervention (specialized polyclinic) on Quality of Life in RE with a significantly improvement in intensity of crisis perception. It is necessary a long termfollow-up.

Mental health of children and adolescents with epilepsy: analysis of clinical and neuropsichological aspects / Saúde mental de crianças e adolescentes com epilepsia: análise de fatores clínicos e neuropsicológicos

Epilepsy compromises the development of cognitive and social skills and represents a risk of psychiatric comorbidity. Objective: To compare psychopathological symptoms in children with epilepsy and in a healthy group, and to correlate the results with neuropsychological and clinical variables. Method: Forty five children with idiopathic epilepsy and sixty five healthy controls underwent neuropsychological evaluation and their caregivers replied to a psychopathology questionnaire (Child Behavior Checklist – CBCL). Results: There were significant differences in CBCL, with poorer results showed mainly by patients with epilepsy. There was no significant association between any psychopathological symptom and disease duration or amount of antiepileptic drugs used. There was positive correlation between intelligence quocient and CBCL on items such as sluggish cognitive tempo, aggressive behavior, attention problems and activities and a negative relation between academic achievement, conduct and rule-breaking behavior. Conclusion: Children with epilepsy had the worse results in the psychopathology evaluation. Certain psychopathological variables are related to the cognitive profile, with no relation to clinical variables. .

A epilepsia compromete o desenvolvimento de habilidades cognitivas e sociais e representa um risco para comorbidade psiquiátrica. Objetivo: Comparar sintomas psicopatológicos em crianças com epilepsia e um grupo saudável, e correlacionar os resultados com variáveis neuropsicológicas e clínicas. Método: Quarenta e cinco crianças com epilepsia idiopática e sessenta e cinco controles saudáveis foram submetidos à avaliação neuropsicológica e seus cuidadores responderam a um questionário de psicopatologia (Child Behavior Checklist – CBCL). Resultados: Houve diferenças significativas no CBCL, com piores resultados principalmente para pacientes com epilepsia. Não houve associação significativa entre os resultados e duração da doença ou número de drogas antiepilépticas. Houve relação positiva entre quociente de inteligência e CBCL em itens como tempo cognitivo lento, comportamento agressivo, problemas de atenção e atividades e uma relação negativa entre o desempenho acadêmico e conduta e comportamento de quebras de regra. Conclusão: Crianças com epilepsia apresentaram piores resultados em psicopatologia, com certas variáveis psicopatológicas relacionadas ao perfil cognitivo, mas sem relação com variáveis clínicas. .

The relationship between sleep quality, depression, and anxiety in patients with epilepsy and suicidal ideation / A relação entre qualidade de sono, depressão e ansiedade em pacientes com epilepsia e ideação suicida

The relationships among suicidal ideation, sleep, depression, anxiety, and effects on epilepsy require more research. Objective: The aim of this study was to estimate the prevalence of suicidal ideation in outpatients with epilepsy, and relate this to sleep quality, daytime sleepiness, depression, and anxiety. Method: Ninety-eight non-selected patients were evaluated. The subjects were classified as “suicidal ideators” or “non-ideators”, based on their response to item 9 of the Beck Depression Inventory. Results: The prevalence of suicidal ideation was 13.3% (χ2=50.46, p<0.001). The differences between cases with or without suicidal ideation were statistically significant in relation to sleep quality (p=0.005) and symptoms of depression (p=0.001) and anxiety (p=0.002). Conclusion: Our results revealed that depression and anxiety were associated with sleep quality, daytime sleepiness, and suicidal ideation and that depression and sleep disturbance were good predictors of suicide in subjects with epilepsy. .

A relação entre ideação suicida, sono, depressão e ansiedade, bem como as implicações da epilepsia nessa relação ainda exigem mais pesquisa. Objetivo: Estimar a prevalência de ideação suicida em pacientes ambulatoriais com epilepsia e relacioná-la com qualidade do sono, sonolência diurna, depressão e ansiedade. Método: Foram avaliados 98 pacientes não-selecionados. Os indivíduos foram classificados como tendo ou não ideação suicida, com base nas respostas ao item 9 do Inventário Beck de Depressão. Resultados: A prevalência de ideação suicida foi de 13,3% (χ2=50,46; p<0,001). As diferenças entre os casos com e sem ideação suicida foram estatisticamente significativas em relação à qualidade do sono (p=0,005), sintomas depressivos (p=0,001) e ansiosos (p=0,002). Conclusão: Depressão e ansiedade mostraram associação com qualidade do sono, sonolência diurna e ideação suicida; depressão e distúrbios do sono foram bons preditores de suicídio em epilepsia. .