Policies for the Control and Notification of Chagas Disease: facing the epidemiological silence with the notification of chronic cases
Vitória P. Ramos, Juan Carlos Cubides and Matheus Oliveira1
1MSF – Doctors Without Borders
Contacts: firstname.lastname@example.org, email@example.com, firstname.lastname@example.org
Brazil has made great advances in recent decades with regard to vector control of Chagas disease (CD), substantially reducing the transmission and occurrence of acute cases. Thanks to the efforts undertaken at the national level to control the vector, especially from the end of the 1970s onwards, in 2006 Brazil received the International Certification of Elimination of Transmission of Chagas Disease for its main vector. As important as it is to reach this level, which deserves to be valued and recognized, this great feat had the unwanted consequence of making people affected by Chagas disease invisible, especially those who already live with the chronic phase of the disease. These people still suffer today from the lack of adequate public policies to face this situation, which is still a major public health problem, but politically neglected.
Within this scenario, the epidemiological surveillance of chronic cases of Chagas still represents an important medical and social challenge in the affected countries. It is common to work only with estimates and the real extent of the problem and its consequences is little known, which makes it difficult to plan appropriate responses by health systems.
According to the II Brazilian Consensus on Chagas Disease, the most recent estimates of the number of people affected by CD in Brazil range from 1.9 million to 4.6 million people. This significant variation between different studies is just proof of the epidemiological silence that we face today in relation to this disease. Even more serious are the estimates that more than 80% of these people have never had access to the diagnosis, that is, they are unaware of their condition and have been denied their right to antiparasitic treatment and will possibly only enter the health system when they suffer problems as a result of the manifestation of the disease. illness that could have been prevented with timely diagnosis and treatment.
The economic impact of the disease during the chronic stage is high as it affects individuals in their full productive phase, from 30 years of age. If we consider that between 30 and 40% of infected people will develop severe cardiac and digestive lesions in a period of 5 to 20 years after infection and will require the use of complex supportive therapies, the estimated costs reach approximately US$ 750 million per year. Furthermore, life expectancy for these chronic cases is reduced by between 5 and 10 years once they reach clinical diagnosis.
One of the main and first ways in the field of public policies to start facing this great challenge is to find people who are at this stage of the disease and have concrete knowledge of the epidemiological reality in the country. Today in Brazil, only acute cases of CD are subject to compulsory notification, which is done by completing the Acute Chagas Disease Investigation Form, standardized throughout the national territory. Between 2000 and 2013 there were a total of 1570 cases of Acute Chagas Disease (ACD) registered, with almost 70% of the cases originating from oral transmission, which increased significantly after the outbreak of oral transmission by sugarcane in Santa Catarina in 2005.
Os próprios boletins epidemiológicos fornecidos pelo Ministério da Saúde apontam que predominam os casos crônicos no país, mas o último inquérito feito para apurar os casos crônicos se deu em 2008 e não contou com um amplo rastreamento diagnóstico que tornasse possível conhecer realmente a quantidade dos casos crônicos no país.
A notificação de casos crónicos é uma ação de grande relevância em saúde pública, pois os dados de morbidade e mortalidade são usualmente imprecisos. O número de portadores de doença cardíaca chagásica crônica, por exemplo, é estimado em bases irrealistas (número de infectados), com base em uma porcentagem de suposição (extremamente variável) de casos que se espera que desenvolvam esse tipo de manifestação clínica, sem considerar as diferenças marcadas regionalmente. A população infectada é desconhecida, principalmente porque a demanda espontânea de serviços médicos corresponde quase exclusivamente a casos crônicos graves. A notificação possibilitaria então conhecer a distribuição, a magnitude e a tendência da doença e a identificação dos fatores de risco, condicionantes sociais, econômicos e ambientais, com o objetivo de subsidiar o planejamento, a execução e a avaliação das atividades de prevenção e controle.
Já existe no Brasil uma experiência estadual de notificação compulsória dos casos crônicos: em 2013, no estado de Goiânia, a Resolução Nº 004/2013 – GAB/SES-GO instituiu a obrigatoriedade da notificação dos casos crônicos de DC, dentre outros agravos a serem incluídos para além da lista nacional de notificação compulsória. De acordo com a atual coordenadora do programa de Doença de Chagas do estado, Dra. Liliane Siriano, neste período foi realizada uma visita de campo pelo interior do estado que constatou a grande falta de cobertura e assistência às pessoas afetadas pela DC na fase crônica. O Estado não chegava a essas pessoas, que representavam quase a totalidade dos casos em Goiás. Foi decidido então que a notificação dos crônicos seria uma forma de encontra-las e salvaguarda-las de forma mais estrutural. Essa pequena mudança que vem melhorando a qualidade das informações epidemiológicas no estado. Segundo dados da SES-GO, desde que passou a ser de notificação compulsória foram registrados 1540 casos crônicos de DC no estado até março de 2016. A SES acredita que o acompanhamento dos casos crônicos pode reduzir a alta média anual de óbitos da doença (750 mortes/ano) e melhorar a qualidade de vida dessas pessoas. Ainda há desafios para a efetiva implementação da prática que poderiam ser facilitados se houvesse a obrigatoriedade a nível nacional.
Além da notificação dos casos crônicos, Goiás também é o estado pioneiro em incluir o diagnóstico para DC no kit pré-natal. Em parceria com a Associação de Pais e Amigos dos Excepcionais (APAE) Goiânia, a Secretaria Estadual de Saúde de Goiás (SES-GO) criou o Programa de Proteção à Gestante de Goiás em 2002, mais conhecido como “Teste da Mamãe”, que realiza a triagem neonatal utilizando a coleta de sangue periférico em papel filtro para prevenir a transmissão vertical de doenças genéticas e infecciosas. Em estudo que analisou amostras de 348.037 gestantes de 245 municípios do estado de Goiás de 2003 a 2009 , foram incluídos testes para triagem de doenças infecciosas virais (hepatite B, hepatite C, HIV, rubéola, HTLV e CMV), bacterianas (sífilis) e protozoários (toxoplasmose e infecção pelo Trypanosoma cruzi).
A grande surpresa levantada nesse estudo se deu justamente nos dados de prevalência da Doença de Chagas, que foi o terceiro agravo mais prevalente dentre as doenças infecciosas analisadas, apresentando 0,51% de prevalência (1.768 casos). Os dois primeiros agravos foram sífilis, com 1,16%, e toxoplasmose, com 0,67%. Para efeitos comparativos, HIV veio em sexto lugar, com 0.13% de prevalência. O artigo em questão coloca que os dados de DC surpreenderam os pesquisadores pois havia um senso comum de que não haveria mais tantas mulheres em idade fértil afetadas pela doença, outra prova de que a baixa quantidade de casos relatados da doença no país se trata mais de um silêncio epidemiológico e que uma busca ativa acompanhada de rastreamento diagnóstico eficiente poderia surpreender ainda mais e evitar maiores agravos para essas pessoas e para o sistema de saúde.
Another interesting data from the study of the samples from the Mother’s Test is that among the detected cases of CD, 794 women attended post-diagnosis consultations to follow up and of them 56.3% were born in Bahia and 32.9% in Goiás, the others coming from several other states. This highlights the need to multiply this experience in other states.
CD research over the last decade in the country has been characterized by discussions about expanded epidemiological surveillance, supported by sero-epidemiology strategies (emphasizing the importance of identifying chronic patients and referring them to health services) and more recently, by treatment of chronic cases in younger patients.
Considering the characteristic of CD in being a silent disease, often without symptoms, it is even more difficult to transform so many quality academic works and, mainly, the voice of the affected people into a concrete public policy agenda and face this health problem in a proud way public that is almost forgotten. Improving the quality of CD epidemiological data in Brazil is a challenge that must be faced and the country owes a great debt to Carlos Chagas and to the generations of entire families affected for centuries by what is “the most Brazilian of diseases”. After great efforts to control transmission, finding the affected people and expanding their diagnosis and treatment in basic health care is the next step to be taken. Compulsory national notification of chronic cases is a key piece to complete this puzzle.
BRAZILIAN CONSENSUS ON CHAGAS DISEASE AS A TOOL TO GUARANTEE THE RIGHT TO HEALTH THROUGH ACCESS TO COMPREHENSIVE CARE IN THE UNIQUE HEALTH SYSTEM (SUS).
Alberto Novaes Ramos Jr.
Federal University of Ceara, School of Medicine, Department of Community Health, Fortaleza, Ceara, Brazil.
Andrea Silvestre de Sousa
Oswaldo Cruz Foundation, Evandro Chagas National Institute of Infectious Diseases, Rio de Janeiro, Rio de Janeiro, Brazil.
Federal University of Rio de Janeiro, School of Medicine, Department of Internal Medicine, Rio de Janeiro, Rio de Janeiro, Brazil.
Joao Carlos Pinto Dias
Oswaldo Cruz Foundation, René Rachou Institute, Belo Horizonte, Minas Gerais, Brazil.
In Brazil, Chagas disease has a significant morbidity and mortality burden, with millions of people affected in different scenarios across the country, given historical and current migratory flows. Despite this, significant failures persist in the Unified Health System (SUS) in ensuring access to diagnosis and treatment for affected people, their families and the community. In addition, it is recognized that its character as a chronic condition and the need to prevent disabilities and rehabilitate the affected people bring challenges that have not yet been overcome. On the other hand, the stigma related to the disease and the impact on quality of life potentiate the cycle of neglect and poverty.
Globally, it is estimated that less than 90% of people in need of specific treatment in the world actually have access to this intervention. There are critical gaps in terms of the availability of effective diagnostic methods and new safer and more effective therapeutic options in the different stages of the disease. Access to these interventions is recognized as a critical element of the right to health, with a view to reducing the burden of disease and contributing to breaking the cycle of poverty in different generations of families and communities.
After almost 110 years since the discovery of the disease by Carlos Justiniano Ribeiro Chagas (1909), important gaps in the technical, scientific and political fields make the construction of any synthesis document of scientific evidence a great challenge. The scarcity of scientific evidence for neglected diseases in general puts affected people in a situation of great vulnerability and amplifies the cycle of neglect. Despite this scenario, these issues must be overcome to effectively face this condition. In the case of Chagas disease, the status of indications for specific treatment (expanded in the current Brazilian consensus) and the epidemiological surveillance of the disease in its chronic phase (strongly recommended in the current Brazilian consensus) are emblematic.
In fact, guidelines, protocols and consensuses have become increasingly common as tools that help care and clinical practice (without replacing clinical judgment), generating improvements in teaching and management, in addition to serving as a basis for claims by social movements. An important objective of these documents would be to expand the scope of the agenda of diseases that are insufficiently recognized by society in general, such as Chagas disease and other neglected diseases, organizing the work of health services and professionals.
On September 8, 2000, the Millennium Development Goals (MDGs) emerged from the United Nations Millennium Declaration, adopted by the 191 member states. Although they were not directly mentioned in the document, neglected tropical diseases (NTDs), including Chagas disease, had their main social determinants put into perspective. Among these, the following objectives were included: 1 – End hunger and extreme poverty, 2 – Provide quality basic education for all, 3 – Promote gender equality and women’s autonomy, 4 – Reduce infant mortality, 5 – Improve the health of pregnant women, 6 – Combat AIDS, malaria and other diseases, 7 – Ensure quality of life and respect for the environment and 8 – Establish partnerships for development.
In the midst of debates on the Brazilian response to this agenda, at the instigation of the Ministry of Health (MS) of Brazil, in articulation with specialists and researchers, a series of meetings took place between the second half of 2004 and the first half of 2005 of planning for the composition of the First Brazilian Consensus on Chagas Disease. Among the most significant activities, the National Meeting for the Constitution of the Brazilian Consensus on Chagas Disease was organized from June 7 to 9, 2005, the result of a partnership between the National Program for Control of Chagas Disease and the Epidemiology Unit of the Program National STD and AIDS Department – currently the Department of Surveillance, Prevention and Control of STIs, HIV/AIDS and Viral Hepatitis (both from the Health Surveillance Secretariat, Ministry of Health). Renowned Brazilian specialists and researchers were present, many of whom were authors of the document. The strong technical-political movements of the meetings on Applied Research in Chagas Disease in Uberaba, Minas Gerais, under the leadership of the Brazilian Society of Tropical Medicine (SBMT) collaborated greatly to enhance this initiative.
At that time, they were already explicitly flagged as concerns for the country:
“Strengthen the priority of Chagas disease as a public health problem, incorporating in a totalizing, integral and intersectoral way, other aspects beyond vector control, such as new strategies for epidemiological surveillance and control of transfusional and vertical transmission, the development of priority research and comprehensive care for individuals with chronic Chagas disease in the network.”
“To reinforce that the Technical Management of the Ministry of Health for the control of Chagas disease must be valued, both from the point of view of its technical staff (human resources) and the contribution of financial resources (budget).”
The publication of this First Consensus had a significant technical-political impact, not only in the country, but also in other endemic regions, as well as in non-endemic regions that were being challenged by the occurrence of the disease related to migratory movements. There was a commitment to compose systematic reviews every 5-10 years in order to guarantee the best evidence. With this accumulated experience, given the clear need to revise that document, a new major work was undertaken. The objective was to systematize and standardize strategies for the diagnosis, treatment, prevention and control of Chagas disease in Brazil, in order to reflect the most current scientific evidence available at national and international levels.
The movement was triggered between 2010 and 2011, with the beginning of planning. During this period, it became a reference document, especially for managers, researchers, health professionals, university professors and society in general, including the organized social movement focused on Chagas disease that was structured in 2010 in a Federation International – FindeChagas. However, it was only in May 2013 that the effective construction of the entire process resumed in Brazil, based on the reorganization of the nine working groups and the strengthening of the coordination group within the Ministry of Health and the SBMT.
On the international stage, the post-2015 (post-MDG) agenda was reconfigured, generating a new and ambitious universal agenda with the 17 Sustainable Development Goals (SDGs) and 169 goals. For the first time, NTDs are incorporated into a specific goal within an objective (3) that refers to “ensure a healthy life and promote well-being for all, at all ages”. Target 3.3 refers to “by 2030, end epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases, and combat hepatitis, waterborne diseases, and other communicable diseases.”
Dealing with the SDGs, the II Brazilian Consensus on Chagas Disease is published, a fundamental milestone to configure part of the Brazilian response. The care throughout the process reinforced the search to reach contexts beyond the Brazilian ones, with a view to being used by other endemic countries, but also non-endemic ones.
The complex and challenging political and economic scenarios in Brazil and Latin America reinforce the importance of building consensus. Brazil has played a leading role in this movement along with other countries. However, they have also raised questions that aim to reflect on the real limit between the availability of evidence-based guidelines and the health needs perceived and felt by the affected people. In addition to the availability of evidence-based guidelines, it appears that between and within different countries there is a lack of minimal standardization of the indicated behaviors, which in fact creates even greater obstacles in thinking about an integrated global response.
The consensus-building process involves a group of experts and/or researchers, and should also include representatives of the affected populations. For the composition of this 2015 Brazilian document, collectively available quantitative evidence was taken into account. This evidence was filtered through a “clinical lens” of the elaboration group in order to guarantee greater rigor in the recommendations and their applicability in real SUS scenarios. It took into account the current epidemiological scenario, technical and scientific advances based on evidence, as well as the experience of several specialists who are dedicated to the study of the disease and act as national and international references.
With all these dimensions included, we sought to compose a document with maximum precision, responsible (for the affected people and their families, the community, science in general and society as a whole), predictable (providing details and specific numbers), defensible ( transparent) and usable (in a variety of real-world settings).
For the affected people, the greatest benefit that can be achieved with the consensus is to improve their health results, with greater assurance that the conduct adopted by health professionals represents national references, envisioning the guarantee of their quality of life. In a broader perspective, the appropriation of consensus by affected people and their families can contribute to them having greater potential to influence public policies. This means, for example, greater integration of control actions in the health system, obtaining in response, the composition of other points of care, aiming at guaranteeing access with equity.
As for health professionals, the adoption of consensus can improve the quality of clinical decisions, especially for those professionals who are not fully qualified or whose conduct is outdated within national public policies. The document’s guidelines can act as a common reference point for prospective and retrospective assessments of health professionals’ practices, aiming at greater qualification in complying with the best care practices.
In summary, the preparation and dissemination of this document aim to contribute to the improvement of clinical practice, prevention, research development and the planning of public policies aimed at health surveillance and control of Chagas disease in all spheres of management, aiming at reducing its morbidity and mortality in Brazil. It is also intended to instrumentalize the affected people in making their individual or collective decisions, as social movements.
The current political-economic scenario in Latin America has rapidly increased social inequalities, while at the same time weakening the role of the State in the development and regulation of health care actions, surveillance and control of neglected diseases, such as the disease of Chagas. Brazil in the last three years, in particular, has rapidly retreated in its social policies, with a strong deepening of income concentration, being once again included in the list of the most unequal countries in the world. This expands the contexts of individual and social vulnerability that place old and new determinants for the occurrence of transmission of this disease. At the same time, the weakening of the health care network in the SUS further limits access to services, generating situations of serious programmatic vulnerability, with strong restriction of access to health, especially in areas of greater endemicity. It is hoped that this scenario does not diminish the great potential that the II Brazilian Consensus on Chagas Disease may have.
Comprehensive Care for the Patient with Chagas Disease
A Proposal for Caring
Wilson de Oliveira Jr.*
Utopia is there on the horizon. I take two steps closer, she takes two steps away. I walk ten steps, and the horizon runs ten steps. As much as I walk, I will never reach. What is utopia for? It’s for this: so that I don’t stop walking.
The economic growth model adopted in the country in the twentieth century greatly contributed to the rural-urban migration of individuals with Chagas disease (DC), leading them to look for large centers in search of better job opportunities, resulting in the called “urbanization” of the disease. It is estimated that 70% of these patients live on the outskirts of large cities in conditions as precarious as those found in the rural area of origin 1.Currently, around one million patients with the disease live on the outskirts of the cities of São Paulo, Belo Horizonte and Rio de Janeiro, thus constituting a true urban endemic. two
Although the advances in controlling the transmission of Chagas disease are undeniable, especially in actions aimed at combating vectors and ensuring transfusion safety, it is still estimated that there are around three million chronic patients remaining. Of these, 30% have or will have cardiac impairment, which requires the creation of structured services for their follow-up. Despite the enormous importance of chronic Chagas heart disease (CCC) in endemic countries, the definitions of clinical management regarding patients with this pathology are derived from the transposition of knowledge acquired in studies carried out in other heart diseases. Therefore, the creation of structured services to care for patients with CCC, in addition to having a positive impact on care, will encourage teaching and research, thus minimizing the current shortage.3,4
CD is a complex syndrome, especially when it evolves with heart failure and/or severe arrhythmias, with high morbidity and mortality. Considering the importance of the impact of social, economic and cultural factors involved in the genesis and evolution of the disease, its approach requires the adoption of a care model that transcends the purely biological aspect, seeking to offer the patient comprehensive care that takes into account the set of biological, psychological and social determinants. This initiative requires the formation of a multidisciplinary team, technically well prepared and in tune with the ideology of care. Experience has shown that, given these peculiarities, an important challenge is imposed on the health system, since there are numerous gaps in the handling of patients when followed up in clinics without adequate structure.5
An adequate structure implies its own outpatient space, linked to a hospital or with hospital backup, with availability of non-invasive and invasive diagnostic methods, clinical and surgical treatment and alternatives for pacemaker implantation and cardioverter-defibrillator/ICD. This service aims to improve adherence to treatment, decrease morbidity and mortality and have a positive impact on patients’ quality of life. 5
It should be noted that caring for patients with CCC implies a context of multiple, growing and complex care demands that justify the creation of structured services to enable comprehensive care, which should preferably be created in teaching hospitals.
1. Structured Service Attributions
1- Carry out the etiological diagnosis using clinical-epidemiological data and serological tests (two tests with different methodologies).
2- Staging the cardiac impairment that will determine the periodicity of follow-up.
3- Establish the therapeutic plan (etiological and symptomatological) and the prognosis according to the degree of cardiac involvement.
4- Monitor the patient systematically.
5- Identify associated digestive impairment and, when present, guide or refer to a reference service in gastroenterology.
6- Treat the identified comorbidities or refer the patient to a specialized service.
7- Stimulate adherence to pharmacological and non-pharmacological treatment, optimizing the cost/effectiveness ratio.
8- Provide educational actions, to the patient, family and caregivers, about the disease, self-control, aiming at the early identification of signs and symptoms of cardiac decompensation.
9- Clarify about the impossibility of donating blood, organs and tissues.
10- Provide nutritional guidance.
11- Offer psychological support to patients and their families, aiming to reduce stigma, self-prejudice, taboos and beliefs in relation to diseases.
12- Guidance on medical, labor and social security aspects, pregnancy, family planning, physical exercise and sexual activity.
13- Clarify the patient and his family, when indicated, about the need for pacemaker or ICD implantation, as well as heart transplantation.
14- Explain about the prevention of aggravating factors (alcohol, smoking, licit and illicit drugs).
15- Train and recycle health professionals with a specific focus on the peculiarities of patients with CCC, encouraging teaching and research.
16- Identify other family members contaminated by T.cruzi and incorporate them into the service for therapeutic conduct.
17- Stimulate and support the creation of associations of patients with Chagas disease, aiming at a better integration of its participants (patients and family members), establishing a voice channel with the scientific and political community regarding their claims.5
2. Multiprofessional team
Multidisciplinarity is now recognized as the best form of care for patients with chronic disease. When creating a service designed and dedicated to caring for people with Chagas disease, it is important to consider the peculiarities and multiple needs of this population, seeking to understand them within a biopsychosocial context, which presupposes a more efficient assistance. and closer to their reality.6,7,8,9 In this work proposal, each team member has their role defined, and must know their limits, possibilities and responsibilities, although it is essential that everyone interacts with each other. Each of them observes a facet of truth from the same individual. It is necessary that this team has basic knowledge of the CCC, as well as the routine of its conduction, so that everyone speaks the same language. In this way, we seek to avoid distorted or even iatrogenic information. Faced with the need for multiple knowledge interactions, the great challenge is to maintain a climate of cooperation in the team environment, always avoiding predatory competition. 10,11,12
The structured service should ideally have the following professionals: cardiologist, nurse, psychologist, nutritionist and social worker, and can be expanded according to the adoption of new therapies, with the participation of the physical educator, physiotherapist, pharmacist, occupational therapist. It is worth mentioning that the size of the team must be adjusted to the reality and possibilities of each service, to patient demand and, above all, to what is proposed.5, 13
2.1. Cardiologist Doctor
It is up to the doctor to receive the patient referred either by primary care, either by the hemotherapy services, or from other sectors of the hospital. From clinical-epidemiological anamnesis and serological confirmation, the diagnosis is established, and complementary exams are performed. According to the degree of cardiac impairment, the therapeutic plan is drawn up, and, at the same time, the presence of comorbidities must be identified, treating them or referring the patient to a specialized service. It is important to emphasize the establishment of a good doctor-patient relationship and their families in an empathetic way. Whenever possible, the patient should be accompanied by the same doctor, aiming to strengthen the bond and, consequently, adherence to treatment. In addition to the care attributions, the physician is also responsible for coordinating the service, providing support and interacting with the other professionals on the team.5,13
Nursing professionals play a fundamental role in the follow-up of patients with CCC, and it is up to them to maintain: frequent contact with the patient from the beginning of treatment, monitoring signs and symptoms that indicate early decompensation; water balance control; guidance to patients and their families; managing the interaction between the various professionals on the team; control of interqueries and database feeding.
The nursing consultation is usually consecutive to the doctor’s, when pharmacological and non-pharmacological guidelines are reinforced, as well as the strengthening of the patient’s bond with the team. Nursing must also have a permanent voice channel with patients, through a specific telephone line “Dial CCC”, used as a tool for clarifying doubts, guidance regarding treatment, referral to emergencies, when necessary, in addition to searching active management of evaded patients, home visits and permanent telephone contact, especially after hospital discharge. Frequent contact will enable early detection of the need for additional therapeutic interventions. 5,9,13
Nutritional care is of paramount importance in the follow-up of patients with CCC. It is up to the nutritionist to establish the diagnosis of nutritional status and, through anamnesis, to know the quantity and quality of food consumed in the patient’s daily life. It is through this dietary assessment that the nutritionist can detect preferences and| food aversions, as well as allergies and intolerances to certain foods.
One factor that must be present in nutritional and dietary guidance is the prescription within the socioeconomic, cultural and environmental possibilities of patients. This allows the proposed food plan to be feasible, contributing to patient adherence and food reeducation. The composition of foods must be clarified, especially regarding the sodium content they contain, especially in processed foods. It is also necessary to differentiate between diet foods and light foods. Dietary guidance should be planned based on a previously requested biochemical evaluation during the medical appointment. Depending on the results found, a more specific nutritional intervention with regard to food restrictions and releases may be necessary. 5,9,13
Addressing psycho-emotional aspects is one of the important pillars of the biopsychosocial assistance model. The psychological impact caused by the disease, with the gradual loss of physical capacity, the greater dependence on family members – even for self-care in the most serious cases – the fear of imminent death, frequent hospitalizations, among others, makes the presence of a psychologist essential in the multidisciplinary team. These aspects can lead to a considerable emotional overload, which may favor the appearance of anxiety and depression, being another factor that contributes to the worsening of the disease and favoring non-adherence to treatment. It is up to the psychologist to detect the psycho-emotional aspects that may negatively impact the evolution of the disease, as well as to identify difficulties in affective, sexual, family and social relationships that may increase the patient’s level of stress. It is also up to the professional to identify more severe cases of mental impairment, making the appropriate referral to psychiatric consultation, especially with a view to the possible indication of pharmacotherapy. 5,9,13
2.5 Social worker
The socioeconomic root is strongly involved in the genesis and evolution of Chagas disease. In the case of a neglected disease that basically affects a population excluded by the combination of disease and extreme poverty, it is up to the social worker to identify factors that may make the implementation of care even more difficult. In his evaluation, the following are observed: sanitary condition of housing, means of transportation used, level of education, availability of financial resources to purchase medication or how to obtain it through the Unified Health System (SUS), work or social security status. Once the patient’s socioeconomic status is stratified, measures are taken to minimize the impact of deficiencies that may be hindering adherence to treatment. 5,9,13
2.6 Physical Educator
Still as a perspective within this multidisciplinary approach and understanding the importance of practicing physical exercise, whenever possible there is a need to include a physical educator in the team, aiming to encourage better conditioning of the patient. The practice of exercise, with its widely consolidated benefits, aims to encourage the participation of patients with CCC in a cardiovascular rehabilitation program. This initiative intends not only to restore a satisfactory clinical condition, but also to increase working capacity, with a consequent improvement in the psycho-emotional state.5,9,13,14
The care service for patients with CCC should have the support of a hospital pharmaceutical service, with the aim of guiding the team, patients, their caregivers and family members regarding various aspects related to symptomatic and etiological treatment. 15
3. Role of the Patient
In comprehensive care, the patient is no longer a mere receiver of information and takes on an active role in the therapeutic process, greatly contributing to better adherence to treatment. Each patient should know their diagnosis and treatment, and it is suggested that they always have a summary of their diagnosis and treatment that is clear and up-to-date. Patients should be advised on which service to seek in urgent/emergency cases. The organization of discussion groups allows clarifying doubts about the disease, helping the patient to face the lifestyle changes necessary for their treatment. 5 ,9,13
4. Role of the Family
The family is the third vertex of the so-called therapeutic triangle – doctor, patient and family – playing an active role in the entire process. Family support has a direct influence on adherence to pharmacological and non-pharmacological treatment. For this reason, family members should receive the same guidelines as the patient. On the other hand, those who deal directly with the patient also require special attention from the team, as considerable emotional overload is imposed on them. The active participation of the family also makes it possible to understand how the disease affects the family. Stable, harmonious and supportive family groups work as a stabilizing factor for the patient. On the other hand, families with evident impairment in their dynamics can act as a destabilizing factor and, consequently, contribute to the decompensation of the disease.5 ,9,13,16
5. Education and Health
The education of patients and their families begins by assessing their knowledge about the disease and its treatment. It is through periodic educational actions that the multidisciplinary team can clarify the patient and their families about relevant aspects that are involved in the evolution of the disease.
Individual and/or collective educational activities should be carried out periodically, focusing on information about what the disease is, contagion mechanism, evolution, need for periodic evaluations even in asymptomatic individuals, importance of regular treatment and impossibility of blood donation , organs or tissues. This strategy improves the level of understanding and favors better integration between the team, patients and their families. In this process, the language used must be clear and objective, avoiding the excessive use of technical terms that only increase the distance between the team and the patient.
The group educational process enables the growth of all those involved in the act of caring.16,17,18
6. Expected benefits of a structured service to monitor patients with CCC
The structured service for monitoring patients with CCC can confirm what has been described for other chronic diseases, such as arterial hypertension and heart failure, where this approach has brought a better cost/benefit ratio when compared to non-structured care.18,19,20,21
Although it is known that apparently the implementation of a structured service implies a greater investment in the number of professionals involved, limited financial resources and managerial aspects, it is believed that its creation may be cost-effective in the medium and long term, particularly in relation to the patient with CCC who has an unfavorable socioeconomic situation, making it difficult to access and adhere to treatment. Therefore, this structured care can provide greater access, favoring agility in the diagnosis, optimization and rationalization of existing therapy, in addition to promoting the rescue of a more humanized and individualized care. This proposition should not be seen as a closed mathematical model, but as general guiding principles to assist in the composition of structured services. In short, structured services have the primary mission of promoting assistance that favors the clinical, psychological and social stability of the patient. 22,23,24
- Adjunct Professor of Cardiology at the University of Pernambuco-UPE
- Cardiologist at the University Hospital PROCAPE-UPE
- Coordinator of the Reference Service in Chagas Disease and Heart Failure/PROCAPE-UPE.