Comprehensive Care for Patients with Chagas’ disease
A Proposal for Caring
Wilson de Oliveira Jr.*
Utopia is there on the horizon. I approach two steps, it moves two steps away. I walk ten steps, and the horizon runs ten steps. As far as I walk, I will never reach. What is utopia for? It serves this purpose: so that I do not stop walking.
The economic growth model adopted in the country in the 20th century greatly contributed to the rural-urban migration of individuals with Chagas’ disease (CD), leading them to look for large centers in search of better job opportunities, resulting in the so-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, about 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. 2
Although there are undeniable advances in controlling the transmission of Chagas’ disease, especially in actions aimed at vector control and ensuring transfusion safety, it is still estimated that there are about three million remaining chronic patients. Among these, 30% present or will present cardiac involvement, which demands the need to create structured services for their follow-up. Despite the enormous importance of chronic chagasic heart disease (CCC) in endemic countries, the definitions of clinical management referring to patients with this pathology are derived from the transfer of knowledge acquired in studies carried out in other heart diseases. Therefore, the creation of structured services for the care of patients with CCC, in addition to having a positive impact on care, will make it possible to stimulate teaching and research, thus minimizing the existing 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 management 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 back-up, with the availability of non-invasive and invasive diagnostic methods, clinical and surgical treatment and alternatives for pacemaker and cardioverter-defibrillator/ICD implantation. 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, and should preferably be created in teaching hospitals.
1. Structured Service Assignments
1- Perform the etiological diagnosis through clinical-epidemiological data and serological tests (two tests with different methodologies).
2- Stage the cardiac involvement that will determine the frequency 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 referral service in gastroenterology.
6- Treat the identified comorbidities or refer the patient for consultation in a specialized service.
7- Encourage adherence to pharmacological and non-pharmacological treatment, optimizing the cost/effectiveness ratio.
8- Provide educational actions to the patient, family members 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 in order to reduce stigma, self-prejudice, taboos, and beliefs about diseases.
12- Advise on medical-labor and social security aspects, pregnancy, family planning, physical exercise and sexual activity.
13- Clarify the patient and their families, when indicated, about the need for pacemaker or ICD implantation, as well as heart transplantation.
14- Clarify about the prevention of aggravating factors (alcohol, smoking, licit and illicit drugs).
15- Train and retrain 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 better integration of their participants (patients and families), establishing a voice channel with the scientific and political community regarding their claims.5
2. Multi-professional team
Multidisciplinarity is, today, recognized as the best form of care for patients with chronic disease. When creating a service aimed at caring for people with Chagas’ disease, it is important to consider the peculiarities and multiple needs of this population, trying 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 a defined role, and must know their limits, their possibilities and their responsibilities, although it is essential that everyone interacts each other. Each of them observes a face of the truth of the same individual. It is necessary for this team to have 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 interaction of multiple knowledge, 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 the demand of patients and, above all, to what is proposed. 5, 13
It is up to the doctor to receive the referred patient either through primary care, or through hemotherapy services, or from other sectors of the hospital. Based on clinical-epidemiological anamnesis and serological confirmation, the diagnosis is established, and complementary exams are performed. According to the degree of cardiac involvement, the therapeutic plan is drawn up, and at the same time, the presence of comorbidities must be identified, treating them or referring the patient for consultation at a specialized service. It is important to emphasize the establishment of a good doctor-patient relationship and their families in an empathic way. Whenever possible, the patient should be accompanied by the same physician, aiming to strengthen the bond and, consequently, adherence to treatment. In addition to care attributions, the physician is also responsible for coordinating the service, supporting and interacting with the other professionals in the team. 5.13
The nursing professional plays a fundamental role in the follow-up of patients with CCC, being responsible for maintaining: 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; management of the interaction between the different professionals of the team; control of inter-consultations and feeding of the database.
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 “Disque CCC”, used as an instrument for clarifying doubts, providing guidance on treatment, referral to emergencies, when necessary, in addition to seeking of escaped 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 the nutritional status and, through anamnesis, to know the quantity and quality of the 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 dietary reeducation. The composition of foods must be clarified, especially regarding the sodium content contained in them, especially in processed foods. Diet foods should also be differentiated from light foods. Dietary guidance should be planned through biochemical assessment previously requested in the medical consultation. Depending on the results found, a more specific nutritional intervention with regard to food restrictions and releases may be necessary. 5,9,13
The approach to psycho-emotional aspects is one of the important pillars of the biopsychosocial care 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 the psychologist essential in the multi-professional team. These aspects can lead to considerable emotional overload, which may favor the emergence of anxiety and depression, being another factor contributing 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 serious cases of mental impairment, carrying out the proper referral for psychiatric consultation, especially with a view to the possible indication of pharmacotherapy. 5,9,13
2.5 Social Worker
The socio-economic 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 its evaluation, the following are observed: sanitary condition of housing, means of transportation used, level of education, availability of financial resources to purchase medicines or how to obtain it through the Unified Health System (SUS), employment, or social security situation. Once the patient’s socio-economic condition has been stratified, measures are taken to minimize the impact of deficiencies that may be hampering treatment adherence. 5 ,9,13
2.6 Physical Educator
Still as a perspective within this multidisciplinary approach and understanding the importance of physical exercise, whenever possible there is a need to include the physical educator in the team, aiming to stimulate a 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. Such an initiative is intended not only to restore a satisfactory clinical condition, but also to increase work capacity, with a consequent improvement in the psycho-emotional state. 5,9,13,14
The CCC patient care service must have the support of a hospital pharmaceutical service, with the objective of guiding the team, patients, their caregivers and family members regarding various aspects related to symptomatic and etiological treatment. 15
3. Patient Role
In comprehensive care, the patient is no longer a mere receiver of information and takes an active position in the therapeutic process, contributing greatly to better adherence to treatment. Each patient must know their diagnosis and treatment, as well as it is suggested that they always have a summary of their diagnosis and treatment, which is elucidative and updated. Patients should be advised which service to look for in urgent/emergency cases. The organization of discussion groups allows the clarification of doubts about the disease, helping the patient to face the changes in lifestyle necessary for its 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 members – playing an active role in the whole process. Family support has a direct influence on adherence to pharmacological and non-pharmacological treatment. For this reason, family members should receive the same guidance 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 nuclei 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 with the assessment of 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, the mechanism of contagion, evolution, need for periodic evaluations even in asymptomatic individuals, importance of regular treatment and impossibility of donating blood, organs, or tissues. This strategy improves the level of understanding and favors better integration between the team, the patient 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 everyone involved in the act of caring.16,17,18
6. Expected benefits of a structured service for monitoring patients with CCC
The structured service for monitoring CCC patients can prove 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 unstructured care. 18,19,20,21
Although it is known that apparently the implementation of a structured service implies 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 service can provide greater access, favoring agility in the diagnosis, optimization and rationalization of the existing therapy, in addition to promoting the rescue of a more humanized and individualized service. 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 care that favors the patient’s clinical, psychological and social stability. 22,23,24
- Associate Professor of Cardiology at the University of Pernambuco-UPE
- Cardiologist at the PROCAPE-UPE University Hospital
- Coordinator of the Reference Service in Chagas’ disease and Heart Failure/PROCAPE-UPE