Access to Ambulatory Cardiology Care: Learning from Families Managing Pediatric Heart Disease

Missed ambulatory care visits can lead to worse outcomes and greater use of emergent care for children with complex congenital and acquired heart disease. Through descriptive qualitative inquiry, we explored the barriers to and facilitators of pediatric cardiology ambulatory care for children with complex heart disease.

English- and Spanish-speaking caregivers of children with complex heart disease who missed ≥1 clinic visit at a single, free-standing children's hospital were recruited, with purposeful sampling of Black and Hispanic patients. Semistructured interviews explored telehealth, communication, social determinants of health, and perceived impact of race and ethnicity on care. Content analysis summarized information and identified themes.

Nineteen interviews were conducted, including caregivers of children of lower socioeconomic status (73%), Hispanic ethnicity (37%), Black race (32%), and primarily Spanish speaking (26%). Overarching themes included barriers to care, facilitators of returning to and staying in care, impact of race and ethnicity, impact of diagnosis, and recommendations for improvement. Barriers to care included appointment access, utilization of telehealth regarding patient-provider communication and missed physical examinations, and social vulnerability regarding housing, transportation, and employment. Each barrier was exacerbated by the COVID-19 pandemic. Facilitators to care included trusted patient-provider relationships, family prioritization of cardiac care, telehealth benefits, and hospital-provided financial resources. Race and ethnicity were not perceived to impact care.

Barriers to and facilitators of accessing ambulatory cardiology care were multifaceted in a cohort of diverse and socially vulnerable families caring for children with complex heart disease. Understanding their experience can inform actionable areas of improvement to support access and continuity of care.