Organizational Factors to Support Collaborative Care in Adult Congenital Heart Disease Programs

Collaboration among healthcare workers is critical for adult congenital heart disease (ACHD) programs to provide care to ACHD patients with complex needs. This study aimed to describe ACHD programs' organizational structure, environment, and indicators of collaboration. A cross-sectional survey among ACHD programs in the United States was conducted, including questions on characteristics, personnel, services, and ten indicators of collaboration using a model described by D'Amour. The survey was sent to 86 ACHD programs, and 36 programs (41.8%) responded. The types of ACHD programs' primary institution were combined adult and pediatric institution (61.1%, N = 22), pediatric institution (27.8%, N = 10), and adult institution (11.1%, N = 4), and most ACHD programs had 1 to 3 healthcare organization(s) participating. The median number and interquartile range (IQR) of ACHD providers, advanced practice providers (APP), clinical coordinators, and administrative coordinators or assistants were 4 (IQR 3-5), 1 (IQR 1-2), 1 (IQR, 1-3), and 1 (IQR 1-2) respectively. Among the ten indicators of collaboration, leadership and connectivity were rated higher, and goals, centrality, formalization tools, and information exchange were rated lower. When analyzed by subgroups based on the types of primary institution, statistically significant differences in responses were demonstrated in support for innovation, formalization tools, and information exchange, showing higher levels of collaboration in the combined adult and pediatric institution group compared with the pediatric institution group. This study provided descriptions of the organizational structure and environment of ACHD programs. It also described organizational factors and suggested unique challenges and opportunities ACHD programs face.