“We have already heard that the treatment doesn't do anything, so why should we take it?”: A mixed method perspective on Chagas disease knowledge, attitudes, prevention, and treatment behaviour in the Bolivian Chaco

Background: Chagas disease (CD) is highly endemic in the Bolivian Chaco. The municipality of Monteagudo has been targeted by national interventions as well as by Médecins Sans Frontières to reduce infection rates, and to decentralize early diagnosis and treatment. This study seeks to determine the knowledge and attitudes of a population with increased awareness and to identify remaining factors and barriers for sustained vector control, health care seeking behaviour, and access, in order to improve future interventions. Methodology/Principal findings: A cross-sectional survey was conducted among approximately 10% (n = 669) of the municipality of Monteagudo’s households that were randomly selected. Additionally, a total of 14 in-depth interviews and 2 focus group discussions were conducted with patients and key informants. Several attitudes and practices were identified that could undermine effective control against (re-)infection. Knowledge of clinical symptoms and secondary prevention was limited, and revealed specific misconceptions. Although 76% of the participants had been tested for CD, only 18% of those who tested positive concluded treatment with benznidazole (BNZ). Sustained positive serologies after treatment led to perceived ineffectiveness of BNZ. Moreover, access barriers such as direct as well as indirect costs, BNZ stock-outs and a fear of adverse reactions triggered by other community members made patients opt for alternative treatments against CD such as veterinary ivermectin, used by 28% of infected participants in our study. The lack of accessible care for chronic complications as well as socioeconomic consequences, such as the exclusion from both job opportunities and bank loans contributed to the ongoing burden of CD. Conclusions/Significance: Large scale interventions should be accompanied by operational research in order to identify misconceptions and unintended consequences early on, to generate accessible data for future interventions, and for rigorous evaluation. An integrated, community-based approach tackling social determinants and including both traditional and animal health sectors might help to overcome current barriers and advocate for patients’ rights. Author summary: Chagas disease (CD) is caused by infection with the parasite Trypanosoma cruzi and is on the list of the most neglected tropical diseases on Earth. It has become an international health issue affecting 6–7 million people worldwide, mainly in Latin America. We performed a qualitative and quantitative study in Monteagudo, Bolivia, in order to paint an overall picture of CD in one of the most afflicted regions in the world: the Bolivian Chaco. Community members and key informants, such as patients and healthcare staff helped us to understand their current situation. Even after a large health campaign, persistent knowledge gaps, misconceptions and structural barriers were identified, leading to normalization and acceptance of CD and its social consequences. Relevant findings included the broad use of ivermectin for CD treatment without scientific evidence. We also found that misinterpretations of serologic test results contribute to a critical attitude towards biomedical treatment that is stopping patients from seeking treatment. With this research we aim to update the data on current knowledge and to analyse remaining barriers for transmission control and treatment, in order to focus future interventions and advocate for patient’s rights.