Involving the population

Chagas disease occurs mainly in Latin America, but is on the rise worldwide due to globalization. It is caused by the single-celled parasite Trypanosoma cruzi, which is mainly transmitted through the bites of predatory bugs. Without treatment, the disease can become chronic and lead to life-threatening damage, particularly to the heart or intestines. Chagas disease, which according to the WHO is one of the neglected tropical diseases, also occurs in Germany, where people with a Latin American migration background are particularly affected. An international team led by Michael Pritsch from the Department of Infectious Diseases and Tropical Medicine at LMU Hospital has now investigated the level of knowledge and attitudes of the population towards the disease using the example of the Monteagudo district in Bolivia - by far the country most affected by Chagas. These results help to ensure the sustainability of health projects and to assess which future strategies for prevention and treatment could be useful.
Monteagudo is located in the Bolivian Chaco, a region where more than half of all local adults are often infected with T. cruzi. "Various NGOs have already carried out health projects relating to Chagas there," says Sandra Parisi, one of the first authors of the paper. As an employee of DAHW Deutsche Lepra- und Tuberkulosehilfe e.V., Parisi, together with Bolivian medical students and scientists, interviewed around ten percent of households in the Monteagudo area to investigate their attitude towards the projects as well as their current knowledge and prevention behavior regarding Chagas. A complex project: "To reach these people, it was sometimes necessary to travel for several days. On site, transportation was often only possible on horseback," explains Parisi. The researchers also conducted qualitative interviews with key people such as patients, doctors, local authorities and traditional healers. "As far as we know, this is the largest and most comprehensive study of its kind in this region to date," says Pritsch.
Compared to previous studies in Latin American countries, the authors found that the population of Monteagudo is better informed about the options for primary prevention - i.e. controlling the predatory bugs. According to the scientists, this shows that state and international campaigns have been successful in recent years. However, other forms of transmission, such as through contaminated food or from mother to child, were far less well known.
Chagas is associated with fear and social consequences, such as exclusion from formal job offers and bank loans. Nevertheless, to the astonishment of researchers, the disease is perceived as very normal. "If you don't have Chagas, you're not a real Chaqueño - we often heard statements like this," reports Parisi. The authors were also concerned about the often negative attitude of the population towards the current treatment of choice with the drug benznidazole. People often preferred alternative treatments because they are more readily available and have fewer side effects. An important reason for this was also a misunderstanding in the interpretation of rapid tests based on antibody examinations. A test that remained positive was often wrongly interpreted as a treatment failure.
"This underlines for us how important it is to accompany future projects in a participatory manner in order to catch such misunderstandings in good time and be able to take countermeasures," says Pritsch. The opinions of other community members, veterinarians and traditional healers were at least as important to people when deciding on treatment as those of doctors. For this reason, the authors believe it is essential to involve all relevant key people in future projects.
"Overall, our study shows impressively that the research and provision of new diagnostic methods or medicines does not automatically lead to an improvement in health, but rather only represents a single aspect," says Pritsch. The authors believe that a holistic understanding of the disease and its local manifestations, taking into account social and cultural aspects, is important. In their opinion, patient-centered healthcare research such as in the current study can contribute to this and show how concepts from the field of "global health" can be implemented in practice.
Text: Dr. Monika Gödde, Press Office LMU