O Associativismo faz bem à saúde? O caso das doenças raras / Is "associativism" good for one's health? The case of rare diseases

Resumo Baseado no questionamento "O Mercado faz bem à Saúde?" de um trabalho inspirador, este artigo realiza um questionamento semelhante, centrado no associativismo e no campo das doenças raras. Partindo da pesquisa realizada no âmbito do Mestrado em Sociologia da Faculdade de Economia da Universidade de Coimbra, este texto coloca em perspectiva as formulações criadas para o campo das condições genéticas que, majoritariamente, partem de uma visão eurocentrista. Analisa-se o campo das doenças raras, identificando os papéis, as relações e as motivações dos diferentes atores, nomeadamente, associações civis, indústria farmacêutica, academia, governo e famílias. Da análise sobressai a preponderância do mercado e da produção de medicamentos, identificando-se um modelo de governação - Modelo Utilitário de Cuidado -, no qual a pessoa que sofre e as suas famílias são esvaziadas da sua subjetividade e transmutadas em medicação e agentes de mercado.

Abstract Based on the question of an inspiring work - "Is the Market good for one's Health?", this paper poses a similar question, centered on "associativism" (belonging to a labor group or association) and the field of rare diseases. Starting from the research carried out in the scope of the Master's Degree in Sociology of the School of Economics of the University of Coimbra, this text puts into perspective the formulations created for the field of genetic conditions that, mainly, depart from a Eurocentric vision. The field of rare diseases is analyzed, identifying the roles, relationships and motivations of the different actors, namely, civil associations, pharmaceutical industry, academy, government, and families. The analysis highlights the preponderance of the market and the production of medicines, identifying a governance model - Utility Model of Care - in which the person who suffers and his/her family are left devoid of their subjectivity and transmuted into medication and market agents.

Conocimientos, creencias y actitudes en padres mexicanos acerca del trastorno por déficit de atención con hiperactividad (TDAH) / Knowledge and beliefs in Mexican parents about attention deficit hyperactivity disorder (ADHD)

Attention deficit hyperactivity disorder (ADHD) generates controversy among the general population on its diagnosis and treatment. This could be explained by the sparse level of education about mental health, which affects the parent's knowledge and beliefs about this disorder. ADHD is highly prevalent and 3-5% of school-age children can be diagnosed. In Mexico it represents 1.5 million cases. It represents more than 30% of all cases in clinical pediatric settings. The reports in health services have shown that the time gap between symptoms identification and treatment is around 8 to 15 years. Moreover, only 25% of the affected children's parents recognize conduct or emotional problems on them and 13% receive mental health care. Attention seeking has been associated with higher severity of the disorder and parent's superior educational level. Despite the advances in the research on neurobiology and psychopharmacology, understanding of the social context that surrounds the disorder is incomplete. Comparatively little is known regarding how parents conceive the symptoms and causes of ADHD and how these parental views may relate to children's treatment. Understanding these factors is important due to the central role of parents in selecting and accessing treatments and service providers for children with ADHD. For parents and children, getting information about ADHD is a lottery that depends on which professional they see and what they read or gather from television and the Internet. Mental health professionals most give complete information to parents and children, so risks and benefits of the different treatments may be considered along with the family's needs, values and cultural background. A better understanding about the parent's knowledge, beliefs and attitudes regarding ADHD would help to improve the communication mechanisms between mental health professionals and parents during the treatment. Objective To describe the knowledge, beliefs and attitudes regarding ADHD in Mexican parents. Methods The study was approved by the local investigation review board. Informed consent was obtained and parents of children and adolescents diagnosed with ADHD were recruited at four mental health facilities (three public and one private) in two cities. Each parent completed the questionnaire of knowledge and beliefs about ADHD (CASE ADHD, parent's version). The questionnaire was created for this study as an instrument with three versions: a) Parents, b) Teachers, c) Health professionals. Results of parent's version were included in this report. This questionnaire incorporates information of other instruments such as Barkley's Evaluation Questionnaire and the one used in the National Colombian Survey for the Consensus of treatment of ADHD 2008. CASE ADHD includes three parts: 1. An identification record with the mother's or father's general data, 2. The ADHD Rating Scale-IV, and 3. A 36 multiple choice questionnaire related to six main areas: a) The caretaker report of symptoms and clinical characteristics related with ADHD, b) The knowledge about ADHD, c) The pathways to care report, d) The Beliefs about ADHD treatment, e) The professional mental health's performance, and f) The parent's perceptions about ADHD. The questionnaire must be completed with the assistance of a mental health professional. The average application time is 30 minutes. For statistical analysis central tendency measures were used; as means, standard deviations and percentages. Results The total sample was integrated by 288 parents of children or adolescents. The 80.1% of the questionnaires were fulfilled by the mother. The mean age of those who answered was 40.06 years, 25.4% reported to complete professional studies. The mean age of patients was 11.15 years (SD = 3.54), 58% were children and 74% were male, their ADHDRS-IV average score was 27.5 (SD = 14.03). Knowledge about ADHD. The 85.4% (N = 246) of the surveyed sample considered ADHD as a disease and 8.3% as a rearing difficulty. The 69.2% (N = 198) of parents said they knew what is ADHD, but only 62.1% reported to receive information by the physician or psychologist about this condition. Attitudes about ADHD. When questioned about what would they do if they suspected that their child had ADHD, 35.1 % (N = 101) would consult a psychiatrist, 21.2% a psychologist, and 12.2% a neurologist or pediatric neurologist. The 28% of parents were deemed unable to manage their child's behavior problem. When we asked about who is able to diagnose ADHD, 49.5% answered that the psychologist, 48.5% the psychiatrist and 19.8% that the pediatrician. The psychiatrist was considered able to treat this condition by 45.8% of the sample followed by psychologist (19.8%), and neurologist (10.4%). Beliefs about diagnosis and treatment. Nearly 63% of the sample (N = 183) considered that the best treatment for ADHD was the combined treatment; 16.3% preferred the psychological approach and psychopharmacology was chosen by only 6.6%. Almost half (48.5%, N= 129) of the sample considered that drug treatment only supports the psychosocial treatment and does not have a therapeutic effect by itself, 46.2% (N = 133) of the sample believed that <

Introducción A pesar de la evidencia científica acerca de las características neurobiológicas del Trastorno por Déficit de Atención e Hiperactividad (TDAH) que apoya el uso de medicamentos para su tratamiento, este padecimiento sigue generando controversia con respecto a su existencia, su persistencia a lo largo de la vida y su tratamiento óptimo. La prevalencia del TDAH a nivel mundial es alta. Los estudios epidemiológicos muestran que 3 a 5% de los niños en edad escolar pueden recibir este diagnóstico. En México se estima que hay aproximadamente 33 millones de niños y adolescentes, de los cuales 1.5 millones podrían ser diagnosticados con TDAH. En el contexto clínico, al menos 30% de los pacientes que acuden a valoración de primera vez en los servicios de psiquiatría infantil presentan problemas de inatención, hiperactividad o impulsividad. Algunos estudios epidemiológicos han mostrado que sólo el 25% de los padres de sujetos con síntomas de trastornos de conducta o del afecto consideraban que sus hijos necesitaban atención médica, y de ellos, el 13% acudió a los servicios de salud mental. La búsqueda de atención especializada se ha asociado con una mayor intensidad del trastorno y un mayor nivel educativo de los padres. Diversas publicaciones relacionadas con el tratamiento del TDAH a lo largo de la vida resaltan la importancia de la intervención multimodal, es decir, un tratamiento multidisciplinario que va más acorde al modelo biopsicosocial el cual, a su vez, se encuentra relacionado con los factores etiológicos y de pronóstico a mediano y largo plazo en el TDAH. En diversos estudios se ha subrayado la importancia de brindar educación adecuada sobre el trastorno y su tratamiento. También sugieren que un mejor entendimiento acerca de las creencias y conocimientos de los padres de niños y adolescentes con TDAH ayudará a mejorar los mecanismos de comunicación, atención y colaboración entre los distintos elementos participantes en el tratamiento del TDAH y reducirá el tiempo entre la identificación del problema y el inicio del tratamiento. Objetivo Describir los conocimientos, las creencias y actitudes de los padres de niños y adolescentes con TDAH acerca de la naturaleza de la enfermedad, la conducta en la búsqueda de atención médica y su tratamiento. Material y métodos La muestra fue conformada por padres de niños y adolescentes que habían recibido el diagnóstico de TDAH por un clínico calificado. Participaron cuatro centros de atención psiquiátrica, tres en la Ciudad de México y otro en la ciudad de San Luis Potosí. El instrumento principal (CASO ADH padres) es un cuestionario autoaplicable y fue escrito específicamente para este estudio. CASO ADHD es un instrumento con tres versiones: a) Padres, b) Maestros y c) Profesionales de la salud. En este estudio se exponen los resultados de la primera versión. Resultados La muestra total se conformó de 288 padres. El 69.2% dijo saber qué es el TDAH, 85.4% consideró al TDAH como una enfermedad y el 8.3% como una dificultad de la crianza; el resto lo consideró un mito, una moda, un invento de la industria farmacéutica o no existente. Alrededor del 63% de la muestra consideró que el mejor tratamiento para el TDAH sería el tratamiento combinado, el 16.3% prefirió el enfoque psicológico y sólo 6.6% eligió la psicofarmacología. Casi la mitad de la muestra, 48.5%, consideró que el tratamiento farmacológico solamente apoya al tratamiento psicosocial. La mayoría de los padres (60%) identificaron los síntomas de sus hijos en su propia conducta durante los años escolares. Conclusiones Es importante mejorar la cantidad y la calidad de educación acerca del TDAH y su tratamiento entre los padres de los pacientes, para que sus decisiones terapéuticas sean más informadas y tengan mejor efecto sobre el pronóstico del paciente.

Videoconferências: sistematização e experiências em telemedicina / Videoconferences: systematization and experiments in telemedicine

A telemedicina é definida como a troca de informações utilizando tecnologia de informação e de comunicação em saúde e a distância. Entre as diversas modalidades da telemedicina incluem-se as videoconferências, que permitem a integração em tempo real, recebendo e enviando áudio e vídeo de alta qualidade entre pontos distantes geograficamente. O objetivo deste trabalho é descrever, de maneira simplificada, os sistemas de videoconferências, destacando-se suas aplicações no contexto da telemedicina. Para a realização de videoconferências são necessários equipamentos que façam captura e reprodução de áudio e vídeo, e que tenham possibilidade de conexão com equipamentos similares, como microcomputadores e equipamentos dedicados. Os tipos de conexão para uma videoconferência são: via ISDN (integrated services digital network) ou via IP (internet protocol). A qualidade do áudio e do vídeo e a velocidade são críticas para o sucesso da videoconferência. Experiências internacionais na utilização de equipamentos de videoconferência, inclusive na radiologia e diagnóstico por imagem, já são uma realidade. No Brasil, relatos mostram iniciativas isoladas de telemedicina, em sua maioria incluindo redes universitárias. A videoconferência representa uma excelente ferramenta para a capacitação e atualização do profissional médico, além de proporcionar grande impacto nos custos do atendimento à população.

Telemedicine refers to the delivery of health care services over a distance. Videoconference is one of the different modalities of telemedicine, allowing real-time interaction. The present study is aimed at describing videoconference systems in a simplified way, focusing on their application in telemedicine. Videoconference involves the necessity of equipment for audio and video capture and reproduction, besides a communication link for connection with similar equipment through ISDN (integrated services digital network) or IP (internet protocol). Video and audio quality is essential for the success of a videoconference. Experiments using videoconferencing equipment in radiology and other fields of medicine are a reality at international level. In Brazil, reports account for some isolated initiatives in this field, most of them involving universities networks. Besides its remarkable impact on costs of medical care delivery for the population, videoconference represents an invaluable tool for physicians in their education and knowledge updating.