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These actions have helped improve the diagnosis rate of Chagas disease from 5-10% to 45% in Catalonia.
The Drassanes-Vall d’Hebron International Health Unit has led a 13-year study with the aim of improving detection and access to diagnosis and treatment of Chagas disease in the Barcelona metropolitan area. From 2004 to 2017, different strategies were established to reach people at higher risk of the disease, especially immigrants from Latin America. The results are now published in PLOS ONE.
Chagas disease is endemic in Latin America. It is caused by Trypanosoma cruzi, a parasite that is generally transmitted by a kissing bug bite, although it can also pass from infected mothers to offspring during pregnancy, and by transfusions or organ transplants. It can cause digestive and/or cardiac complications that can become serious. However, if treated early, there are drugs to remove the parasite from the body and thus cure the disease. Around the world, Chagas disease affects between 6 and 7 million people. Even so, in Europe it is estimated that only between 5 and 10% of infected people have been diagnosed, since many patients are asymptomatic or have mild symptoms.
In Barcelona, migrant populations in Latin America, those that are most affected by Chagas disease, face multiple complex barriers to access diagnosis and treatment: administrative barriers, such difficulties accessing healthcare services; and also psychosocial barriers, such as fear of disease or stigma, often due to ignorance of the characteristics of the disease itself. “It is important to work to improve detection of Chagas disease in at-risk populations, since this can reduce cardiac involvement and increase the quality of life with a holistic view”, explains Dr. Jordi Gómez i Prat, head of the Public and Community Health Team (ESPIC) from the Drassanes-Vall d’Hebron International Health Unit, from the Preventive Medicine Departament at Vall d’Hebron. Thus, these actions have helped improve the diagnosis rate of Chagas disease from 5-10% to 45% in Catalonia.
The study and the actions carried out by Vall d’Hebron have taken into account the difficulties of people at risk to access the healthcare system, based on a comprehensive vision to facilitate diagnosis and treatment and to prevent stigma and exclusion. “This is a pioneering study across Europe in improving accessibility to diagnosis and treatment of Chagas disease, with community-based actions”, highlights Dr. Gómez i Prat.
The first phase of this study carried out in the Barcelona metropolitan area took place between 2004 and 2013. During this time, actions were developed to understand how Chagas disease behaves in migrant populations from Latin America in Barcelona and define the best strategy to reach this community. As Dr. Gómez i Prat assures, “the success of our strategies is based on the involvement of people from the beginning, we take into account their opinion and their fears or concerns”.
Initially, the researchers verified that 65% of the participants, the majority of Bolivian origin, were infected with Trypanosoma cruzi, which demonstrated the existence of the disease in Barcelona and the need to establish sanitary measures in these people. Many times, people stated that they were afraid of having diagnostic tests and knowing whether they were infected, since they inevitably thought that the disease was linked to death.
Between 2008 and 2013, groups and activities were launched to facilitate access to information about Chagas disease and its diagnosis. These initiatives included the creation of the Association of Friends of People with Chagas Disease (ASAPECHA), as well as participation in public events to reach the general population.
Based on the results and experience from the first phase of the study regarding the behavior of people in Latin America and the initiatives that are best accepted among the population, the researchers decided the methodology to be followed during the second phase. Thus, between 2004 and 2017, three strategies were implemented with the aim of improving access to diagnosis and treatment of Chagas disease: informative workshops, participation in events and in situ screening actions.
The workshops consisted of one hour talks for a maximum of 15 participants with the aim of informing and educating about the disease. After the talk, they were invited to have a visit at the Drassanes-Vall d’Hebron International Health Unit to take the test and find out whether they were infected with Trypanosoma cruzi. 159 out of 313 people who attended the talks were tested, and 33 of them were found to be infected.
On the other hand, they carried out actions in cultural events or crowded meetings. In this case, the presence of a large number of people in the same place during their free time (for example, a festival) was useful to inform about Chagas disease. In this case, 352 people were informed, 112 were tested and 25 were positive.
Finally, in situ actions were also organized in cultural events but, in this case, participants could be tested in there. “Many times, it was difficult for people to go to a healthcare center to take de test, since it usually coincides with their work hours. This way, we were next to them during their free time so the screening was much more easy”, stated Estefa Choque, community health agent at the Drassanes-Vall d’Hebron International Health Unit. Thus, 956 people were reached, 830 of whom were tested and a total of 138 positives for Trypanosoma cruzi were obtained.
In parallel, since 2012, the program Pacient Expert Catalunya en malaltia de Chagas en fase crónica (Expert Patient Catalonia in chronic phase Chagas disease) was launched, together with the Department of Health and with the recognition of the World Health Organization (WHO) as a good strategy to empower affected people. “The fact of meeting people in the same situation creates an empowering environment. The strength of the group makes people lose their fear and decide to take the test”, explains Isabel Claveria, nurse at the Drassanes-Vall d’Hebron International Health Unit.
Taking into account the results and the effort required by each of the community actions, the researchers recommend establishing a cost-efficient strategy. There is not a best general option, but it must be taken into account the population we want to access and, based on this, decide the best strategy. Thus, if the prevalence of the disease is high in a specific population, it is advisable to carry out in situ actions or informative workshops, since they allow that more people can take screening tests. However, when the prevalence is not known in a certain group, it is more advisable to prioritize participation in cultural events to raise awareness about the disease, since it allows informing a large number of people with fewer resources. “All these actions are accompanied by a work to raise awareness both in the community and in the healthcare community and politicians, who often don’t know the disease”, says Isabel Claveria.
Based on these results, the researchers aim to reach the maximum possible number of people at risk. For this reason, Vall d’Hebron team will carry out several initiatives in the coming months to bring knowledge of Chagas disease closer to the Latin American population living in Barcelona, to facilitate the diagnosis and treatment of people with the disease.
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