RESUMO
It is well documented that Chagas disease (CD) can pose a public health problem to countries. As one of the World Health Organization Neglected Tropical Diseases undoubtedly calls for comprehensive healthcare, transcending a restricted biomedical approach. After more than a century since their discovery, in 1909, people affected by CD are still frequently marginalised and/or neglected. The aim of this article is to tell the story of their activism, highlighting key historical experiences and successful initiatives, from 1909 to 2019. The first association was created in 1987, in the city of Recife, Brazil. So far, thirty associations have been reported on five continents. They were created as independent non-profit civil society organisations and run democratically by affected people. Among the common associations' objectives, we notably find: increase the visibility of the affected; make their voice heard; build bridges between patients, health system professionals, public health officials, policy makers and the academic and scientific communities. The International Federation of Associations of People Affected by CD - FINDECHAGAS, created in 2010 with the input of the Americas, Europe and the Western Pacific, counts as one of the main responses to the globalisation of CD. Despite all the obstacles and difficulties encountered, the Federation has thrived, grown, and matured. As a result of this mobilisation along with the support of many national and international partners, in May 2019 the 72nd World Health Assembly decided to establish World Chagas Disease Day, on 14 April. The associative movement has increased the understanding of the challenges related to the disease and breaks the silence around Chagas disease, improving surveillance, and sustaining engagement towards the United Nations 2030 agenda.
Assuntos
Doença de Chagas , Saúde Global , Aniversários e Eventos Especiais , Doença de Chagas/epidemiologia , Doença de Chagas/história , Doença de Chagas/prevenção & controle , Saúde Global/história , Saúde Global/estatística & dados numéricos , História do Século XX , História do Século XXI , Humanos , Organização Mundial da SaúdeRESUMO
Chagas is a complex, multidimensional phenomenon in which political, economic, environmental, biomedical, epidemiological, psychological, and sociocultural factors intersect. Nonetheless, the hegemonic conceptualisation has long envisioned Chagas as primarily a biomedical question, while ignoring or downplaying the other dimensions, and this limited view has reinforced the disease's long neglect. Integrating the multiple dimensions of the problem into a coherent approach adapted to field realities and needs represents an immense challenge, but the payoff is more effective and sustainable experiences, with higher social awareness, increased case detection and follow-up, improved adherence to care, and integrated participation of various actors from multiple action levels. Information, Education, and Communication (IEC) initiatives have great potential for impact in the implementation of multidimensional programs of prevention and control successfully customised to the diverse and complex contexts where Chagas disease persists.
Assuntos
Doença de Chagas , Compreensão , Doença de Chagas/prevenção & controle , Comunicação , HumanosRESUMO
BACKGROUND: As a Neglected Tropical Disease associated with Latin America, Chagas Disease (CD) is little known in non-endemic territories of the Americas, Europe and Western Pacific, making its control challenging, with limited detection rates, healthcare access and consequent epidemiological silence. This is reinforced by its biomedical characteristics-it is usually asymptomatic-and the fact that it mostly affects people with low social and financial resources. Because CD is mainly a chronic infection, which principally causes a cardiomyopathy and can also cause a prothrombotic status, it increases the risk of contracting severe COVID-19. METHODS: In order to get an accurate picture of CD and COVID-19 overlapping and co-infection, this operational research draws on community-based experience and participative-action-research components. It was conducted during the Bolivian elections in Barcelona on a representative sample of that community. RESULTS: The results show that 55% of the people interviewed had already undergone a previous T. cruzi infection screening-among which 81% were diagnosed in Catalonia and 19% in Bolivia. The prevalence of T. cruzi infection was 18.3% (with 3.3% of discordant results), the SARS-CoV-2 22.3% and the coinfection rate, 6%. The benefits of an integrated approach for COVID-19 and CD were shown, since it only took an average of 25% of additional time per patient and undoubtedly empowered the patients about the co-infection, its detection and care. Finally, the rapid diagnostic test used for COVID-19 showed a sensitivity of 89.5%. CONCLUSIONS: This research addresses CD and its co-infection, through an innovative way, an opportunity of systematic integration, during the COVID-19 pandemic.
Assuntos
COVID-19 , Doença de Chagas , Bolívia/epidemiologia , COVID-19/epidemiologia , Doença de Chagas/diagnóstico , Doença de Chagas/epidemiologia , Humanos , Pandemias , SARS-CoV-2RESUMO
It is well documented that Chagas disease (CD) can pose a public health problem to countries. As one of the World Health Organization Neglected Tropical Diseases undoubtedly calls for comprehensive healthcare, transcending a restricted biomedical approach. After more than a century since their discovery, in 1909, people affected by CD are still frequently marginalised and/or neglected. The aim of this article is to tell the story of their activism, highlighting key historical experiences and successful initiatives, from 1909 to 2019. The first association was created in 1987, in the city of Recife, Brazil. So far, thirty associations have been reported on five continents. They were created as independent non-profit civil society organisations and run democratically by affected people. Among the common associations' objectives, we notably find: increase the visibility of the affected; make their voice heard; build bridges between patients, health system professionals, public health officials, policy makers and the academic and scientific communities. The International Federation of Associations of People Affected by CD - FINDECHAGAS, created in 2010 with the input of the Americas, Europe and the Western Pacific, counts as one of the main responses to the globalisation of CD. Despite all the obstacles and difficulties encountered, the Federation has thrived, grown, and matured. As a result of this mobilisation along with the support of many national and international partners, in May 2019 the 72nd World Health Assembly decided to establish World Chagas Disease Day, on 14 April. The associative movement has increased the understanding of the challenges related to the disease and breaks the silence around Chagas disease, improving surveillance, and sustaining engagement towards the United Nations 2030 agenda.
RESUMO
Chagas is a complex, multidimensional phenomenon in which political, economic, environmental, biomedical, epidemiological, psychological, and sociocultural factors intersect. Nonetheless, the hegemonic conceptualisation has long envisioned Chagas as primarily a biomedical question, while ignoring or downplaying the other dimensions, and this limited view has reinforced the disease's long neglect. Integrating the multiple dimensions of the problem into a coherent approach adapted to field realities and needs represents an immense challenge, but the payoff is more effective and sustainable experiences, with higher social awareness, increased case detection and follow-up, improved adherence to care, and integrated participation of various actors from multiple action levels. Information, Education, and Communication (IEC) initiatives have great potential for impact in the implementation of multidimensional programs of prevention and control successfully customised to the diverse and complex contexts where Chagas disease persists.
RESUMO
Chagas disease (CHD) has become a challenge in Spain due to the high prevalence of immigrants coming from endemic areas. One of the main difficulties for its control and elimination is its underdiagnosis. The identification and integral treatment of CHD are key to increasing rates of diagnosis, overcoming psycho-social barriers and avoiding CHD progression. Community interventions with in situ screening have proven to be a useful tool in detecting CHD among those with difficulties accessing health services. To determine the underdiagnosis rate of the population most susceptible to CHD among those attending two different Bolivian cultural events celebrated in Barcelona; to describe the sociodemographic characteristics of the people screened; and to analyse the results of the screening. The community interventions were carried out at two Bolivian cultural events held in Barcelona in 2017. Participants were recruited through community health agents. A questionnaire was given to determine the participants' prior knowledge of CHD. In situ screening was offered to those who had not previously been screened. Those who did not wish to be screened were asked for the reason behind their decision. Results were gathered in a database and statistical analyses were performed using STATA v14. 635 interviews were carried out. 95% of the subjects reported prior knowledge of CHD. 271 subjects were screened: 71.2% women and 28.8% men, of whom 87.8% were of Bolivian origin. The prevalence of CHD was 8.9%. Community health interventions with in situ screening are essential to facilitating access to diagnosis.
Assuntos
Doença de Chagas , Bolívia/etnologia , Doença de Chagas/diagnóstico , Doença de Chagas/epidemiologia , Doença de Chagas/etnologia , Serviços de Saúde Comunitária , Emigrantes e Imigrantes , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Programas de Rastreamento , Prevalência , EspanhaRESUMO
With the objective of providing an insightful analysis of Chagas disease in the world, the authors share their collective reflections about the current situation of this public health problem in: rural environments of Latin America; urban environments of endemic and non-endemic areas everywhere; and, at a global level. A perspective based on the 'Democracy and Health Promotion' axis allowed the development of an innovative update about Chagas disease as a model of a complex socio-environmental health problem, with a key set of elements that goes beyond biomedical aspects. The authors created a dialogue between the fundamental elements of the Curitiba Statement on Health Promotion and Equity and crucial aspects of a reflection on the reality of Chagas disease today that at the same time challenges the different actors involved. With that reference, the call to promote a 'critical analysis of viabilities and opportunities for action, considering the potentialities and barriers imposed by the complexity of social movements in the present context of recedes and the loss of rights' was emphasized repeatedly. Finally, on the occasion of the recent creation of the Technical Group on Information, Education and Communication to control Chagas disease, WHO Department of Control of Neglected Tropical Diseases, the authors share reflections to propose an inclusive and transformative approach of health promotion-what we hope is a new horizon for people affected, directly and indirectly, by Chagas disease.
Assuntos
Doença de Chagas/prevenção & controle , Promoção da Saúde/organização & administração , Feminino , Promoção da Saúde/métodos , Direitos Humanos , Humanos , Masculino , Doenças Negligenciadas/prevenção & controle , Política , Fatores Socioeconômicos , Trypanosoma cruziRESUMO
The Catalonian Expert Patient Programme on Chagas disease is a initiative, which is part of the Chronic Disease Programme. It aims to boost responsibility of patients for their own health and to promote self-care. The programme is based on nine sessions conducted by an expert patient. Evaluation was focusing in: habits and lifestyle/self-care, knowledge of disease, perception of health, self-esteem, participant satisfaction, and compliance with medical follow-up visits. Eighteen participants initiated the programme and 15 completed it. The participants were Bolivians. The 66.7 % of them had been diagnosed with chagas disease in Spain. The 100 % mentioned that they would participate in this activity again and would recommend it to family and friends. The knowledge about disease improve after sessions. The method used in the programme could serve as a key strategy in the field of comprehensive care for individuals with this disease.
Assuntos
Doença de Chagas/etnologia , Doença de Chagas/terapia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Educação de Pacientes como Assunto/organização & administração , Autocuidado/métodos , Adulto , Bolívia/etnologia , Doença de Chagas/psicologia , Doença Crônica , Nível de Saúde , Humanos , Estilo de Vida , Pessoa de Meia-Idade , Cooperação do Paciente/etnologia , Satisfação do Paciente/etnologia , Percepção , Autoimagem , Espanha/epidemiologiaRESUMO
El artículo da cuenta de un estudio internacional realizado entre octubre de 2011 y enero de 2012, como fundamento para el diseño y elaboración de un material audiovisual (spot) con el objeto de sensibilizar y visibilizar la problemática del Chagas. La investigación, de carácter cualitativo, recogió los datos de 38 encuestas, respondidas por personas afectadas y especialistas en la temática. La información para cada grupo se ordenó según aspectos que las personas asociaban con la palabra Chagas, y dificultades, retos, desafíos y logros vinculados. Para cada punto se presenta un análisis de las respuestas, relatos y anécdotas relacionadas. Las conclusiones refuerzan la necesidad de conocer y dar a conocer las dificultades que viven las personas afectadas por el Chagas, considerando que se trata de una realidad que tiene diversas manifestaciones dependiendo del contexto...
O artigo apresenta um estudo internacional realizado entre outubro de 2011 e janeiro de 2012, no qual se baseou o desenho e elaboração de um vídeo (spot) que tinha como objetivo a sensibilização e promoção da visibilidade da problemática vinculada à doença de Chagas. A pesquisa, de caráter qualitativo, analisou a informação recolhida por meio de 38 questionários respondidos por pessoas afetadas e especialistas sobre a doença. A informação, para cada um dos dois grupos, foi classificada de acordo com os aspectos que as pessoas associavam com a palavra Chagas, e as dificuldades, adversidades, desafios e conquistas vinculadas com a doença. Para cada um dos referidos aspectos, apresenta-se uma análise das respostas, relatos e anedotas. As conclusões reforçam a necessidade de se conhecer e divulgar as dificuldades vividas pelas pessoas afetadas pela doença de Chagas, tendo em mente que se trata de uma realidade que se manifesta de forma diversa dependendo do contexto...
This paper presents an international study that was conducted between October 2011 and January 2012, in which a video (spot) to boost awareness and raise the profile of Chagas disease issues was designed and developed. This study was of qualitative nature and analyzed information that was gathered from 38 questionnaires that had been answered by individuals affected by the disease and by specialists on this disease. The information from each group was classified according to factors that they associated with the word Chagas, along with the difficulties, adversities, challenges, objectives and achievements relating to the disease. The responses, reports and anecdotes relating to each of these factors were analyzed. The conclusions emphasize the need to know and make known the difficulties that people affected by Chagas disease experience, bearing in mind that the realities are manifested differently depending on the context...
Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Doença de Chagas , Materiais Educativos e de Divulgação , Comunicação em SaúdeRESUMO
BACKGROUND: Chagas disease (CD) is endemic in countries of continental Latin America. Congenital transmission is a major concern worldwide. In 2010, the Public Health Agency of Catalonia (ASPCAT) launched a screening protocol for Trypanosoma cruzi infection in pregnant women and their newborns. In 2012, ASPCAT detected appropriate follow-up of pregnant women but incomplete information about their offspring. METHODS: The PROSICS community health team carried out active surveillance and community health action in target populations. These activities included active case searches, group awareness workshops and visualization campaigns as well as investigation of all lost children born from pregnant women with CD and their families. RESULTS: Overall, 42/179 (23.5%) cases were included in the study: 35/42 (83.3%) children were born in Hospitalet de Llobregat (Catalonia, Spain); 4/42 (16.7%) were born in Latin America; two were miscarried and one was stillborn. The mean age of pregnant women was 31.3 years (SD 5.52; range: 21-44): 90.5% were Bolivian, of whom 74% were diagnosed with CD during pregnancy. Of the 35 newborns, 31 were recovered by community health action; 12/31 were correctly controlled at Hospitalet de Llobregat and 19/31 were controlled at a primary health centre. Of these 19 (73.7%) cases, 14 were not tested for CD by family paediatricians and were recovered by the PROSICS community health team. Finally, two (6.9%) of the 29 newborns tested with serology were positive. CONCLUSIONS: It is essential to implement active surveillance, education and information activities at paediatric primary care and community levels to avoid the loss of CD-infected mothers and their newborns. Training sessions addressed to paediatricians and other involved health professionals would consolidate surveillance and care reference circuits, improving the control of congenital CD.
Assuntos
Doença de Chagas/prevenção & controle , Serviços de Saúde Comunitária/métodos , Conhecimentos, Atitudes e Prática em Saúde , Promoção da Saúde/métodos , Vigilância da População , Complicações Parasitárias na Gravidez/prevenção & controle , Bolívia/etnologia , Doença de Chagas/epidemiologia , Feminino , Seguimentos , Humanos , Recém-Nascido , América Latina/epidemiologia , Gravidez , Complicações Parasitárias na Gravidez/epidemiologia , Espanha/epidemiologia , Adulto JovemRESUMO
OBJECTIVE: To analyze the prevalence of latent tuberculosis infection in immigrants. METHOD: A review was performed of patients less than 35 years old who were seen in an imported disease unit in Barcelona (Spain). RESULTS: A total of 837 tuberculin tests were performed, 728 were read and 351 (48.2%) cases of latent tuberculosis infection were detected. Older patients and those from Africa showed the highest prevalence. CONCLUSIONS: Immigrants in our setting present a high prevalence of latent tuberculosis infection. Few patients follow all the indications, making it necessary to improve strategies directed toward screening and diagnosis, as well as prescription and compliance with preventive treatment.
Assuntos
Emigração e Imigração , Tuberculose Pulmonar/epidemiologia , Adolescente , Adulto , África/etnologia , Antituberculosos/uso terapêutico , Ásia/etnologia , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Prevalência , Estudos Retrospectivos , Fatores de Risco , América do Sul/etnologia , Espanha/epidemiologia , Teste Tuberculínico , Tuberculose Osteoarticular/diagnóstico , Tuberculose Osteoarticular/tratamento farmacológico , Tuberculose Osteoarticular/epidemiologia , Tuberculose Pulmonar/diagnóstico , Tuberculose Pulmonar/tratamento farmacológicoRESUMO
Tuberculosis is a prehistoric American human disease. This paper reviews the literature and discusses hypotheses for origins and epidemiological patterns of prehistoric tuberculosis. From the last decades, 24 papers about prehistoric tuberculosis were published and 133 cases were reviewed. In South America most are isolated case studies, contrary to North America where more skeletal series were analyzed. Disease was usually located at the deserts of Chile and Peru, Central Plains in USA, and Lake Ontario in Canada. Skeletal remains represent most of the cases, but 16 mummies have also been described. Thirty individuals had lung disease, 19 of them diagnosed by the ribs. More then 100 individuals had osseous tuberculosis and 26 also had it in other organs. As today, transmission of the infection and establishment of the disease were favored by cultural and life-style changes such as sedentarization, crowding, undernutrition, use of dark and insulated houses, and by the frequency of interpersonal contacts. The papers confirm that despite previous perceptions, tuberculosis seems to have occurred in America for millennia. It only had epidemiological expression when special conditions favored its expansion. Occurring as epidemic bursts or low endemic disease, it had differential impact on groups or social segments in America for at least two millennia.
Assuntos
Paleopatologia , Tuberculose/epidemiologia , América/epidemiologia , Emigração e Imigração , História Antiga , Humanos , Dinâmica Populacional , Tuberculose/históriaRESUMO
Tuberculosis is a prehistoric American human disease. This paper reviews the literature and discusses hypotheses for origins and epidemiological patterns of prehistoric tuberculosis. From the last decades, 24 papers about prehistoric tuberculosis were published and 133 cases were reviewed. In South America most are isolated case studies, contrary to North America where more skeletal series were analyzed. Disease was usually located at the deserts of Chile and Peru, Central Plains in USA, and Lake Ontario in Canada. Skeletal remains represent most of the cases, but 16 mummies have also been described. Thirty individuals had lung disease, 19 of them diagnosed by the ribs. More then 100 individuals had osseous tuberculosis and 26 also had it in other organs. As today, transmission of the infection and establishment of the disease were favored by cultural and life-style changes such as sedentarization, crowding, undernutrition, use of dark and insulated houses, and by the frequency of interpersonal contacts. The papers confirm that despite previous perceptions, tuberculosis seems to have occured in America for millennia. It only had epidemiological expression when special conditions favored its expansion. Occurring as epidemic bursts or low endemic disease, it had differential impact on groups or social segments in America for at least two millennia