Background: Chagas disease (CD), caused by the parasite Trypanosoma cruzi, results in cardiovascular complications, cardiomyopathy, and death in 30% of people with untreated infections. An estimated 250,000 adults in the USA have CD, but our queries of national databases have found only 4,000 diagnosed individuals. We conducted a mixed-methods investigation to further examine this disparity.

Methods: Data on CD patients were extracted from two electronic health records databases, the Bronx Regional Health Information Organization (Bronx RHIO), covering 5.8 million patients in the Bronx, NY, and TriNetX, a clinical database of 134 million patients in the USA. Univariate statistics were used to describe demographics, clinical characteristics, and cardiac imaging among individuals with CD diagnoses. Bivariate statistics and logistic regression were used to compare CD patients with and without cardiomyopathy. Four focus groups were conducted with community members, clinicians, and staff in NY and AZ to examine barriers and facilitators of screening, diagnosis, and treatment of CD in the USA.

Results: Data were obtained on 61 CD patients (41.0% with cardiomyopathy) in Bronx RHIO and 1,818 CD patients (15.3% with cardiomyopathy) in TriNetX. We found few significant differences among CD patients with and without cardiomyopathy in Bronx RHIO. CD cardiomyopathy patients were more likely to be on antihypertensives, statins, and have received cardiac imaging compared to CD patients without cardiomyopathy in TriNetX. Barriers to CD screening, diagnosis, and treatment include complex testing algorithms, limited awareness, costs, and challenges serving medically underserved patient populations. Facilitators include dedicated staff time, bilingual staff, integrated teams across specialties, and funding mechanisms that will cover testing and treatment costs.

Discussion: CD is underdiagnosed and undertreated in the USA. Improved screening, testing, and treatment programs are needed.