The prevalence of adults with congenital heart disease (ACHD) has expanded substantially, largely due to advances in pediatric cardiology and congenital cardiac surgery. Despite remarkable advances in survival, disparities in outcomes persist. Racially and ethnically diverse patients with CHD experience higher mortality, poorer surgical outcomes, and more frequent lapses in follow-up compared to their White peers in the United States. ,, These disparities cannot be explained by clinical severity alone; they result from hard systemic inequities (i.e., policy-making that gives advantage to one racial group at the expense of another such as neighborhood redlining), enduring adverse social determinants of health, and implicit bias. Nearly half of ACHD patients in some urban systems are non-English-speaking, yet only a fraction receive care in collaboration with an affiliated comprehensive ACHD center. Low socioeconomic status, geographic isolation, and language-discordant care impact patients throughout their lives, and particularly during the vulnerable transitions from pediatric to adult care. Confronting these disparities is essential to provide equitable, high-quality care for this vulnerable population.
The Hispanic ACHD initiative was launched at the Mayo Clinic in Jacksonville, Florida, to address this need. While Hispanic communities represent 27% of Florida’s population, our internal data revealed that only 7.6% of CHD clinic visits were from Hispanic patients. The initiative was designed to reduce this gap by offering linguistically and culturally concordant care, improving access, and increasing visibility. The team consisted of professionals that were bilingual in Spanish and English, including a specialized adult congenital cardiologist, nurse practitioner, and scheduler. The overarching goals included increasing access to language-concordant care, digital health literacy, and promoting global awareness of congenital heart disease.
A major component of the initiative was the launch of Soncco (meaning “heart” in Quechua, the Inca language). It consisted of a digital platform focused on congenital heart disease education launched in Spanish across Facebook, Instagram, and X (formerly Twitter). Soncco’s primary goal was to educate and empower Spanish-speaking patients and their families across the globe on congenital heart disease, raise awareness of congenital heart disease, and encourage direct patients to seek toward specialized care. Soncco was developed by KBJ (ACHD cardiologist bilingual in English and Spanish), MGOV (brand specialist), and SE (President of the Patient Association “Amigos de Corazon” for patients with CHD and their families). An initial survey was performed among parents who belonged to “Amigos de Corazon” to learn about the questions on congenital heart disease that they had. Then, a focus group was held with adolescents and young adults who were members of “Amigos de Corazon” to learn their digital preferences and educational needs. Their input was instrumental in the design of the digital platform, which also used branding concepts to position itself as a trustable, evidence-based tool that had a friendly format and easy-to-follow language, with text that was appropriate for a 4th grade reading level whenever possible.
Soncco achieved substantial digital engagement in the first 6 months of the initiative. The campaign generated over 13.4 million views on Facebook, 7.1 million views on Instagram, and attracted more than 5,000 followers across platforms. Most viewers were adults aged 35 to 44 years (31.3%), followed by those aged 25 to 34 (24.1%) and 45 to 54 (20.7%). The most reached countries included Argentina, Peru, Mexico, Colombia, Chile, and the United States. Hundreds of interactions through direct messages and comments offered a window into the lived experiences of patients and families. Many described delayed diagnoses, challenges in navigating the healthcare system, and a sense of cultural exclusion, with 1 viewer summarizing the sentiment as “ making visible the invisibl e.” The Hispanic ACHD initiative was also linked with clinical impact at Mayo Clinic Florida, with Hispanic patients coming to clinic visits increasing 2.7-fold, and visits by international patients increasing 3-fold compared to the same time period in the year prior.
In conclusion, the Hispanic ACHD initiative at Mayo Clinic Florida offers a replicable framework for addressing language barriers in congenital heart disease care. Together, its components reflect a multidimensional approach to addressing care inequities in ACHD, which combines bilingual care, digital outreach and international provider education. Our program demonstrates measurable improvements in access and visibility for Hispanic patients.
This project was supported by the Mayo Clinic Florida Commitment Against Racism Award. No identifiable patient data were collected or analyzed and therefore it was deemed exempt by the Mayo Clinic Institutional Review Board.
CRediT authorship contribution statement
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