Expanding Access to Specialized Adult Congenital Heart Disease Care Using a Hub-and-Spoke Model of Care

Abstract

Background

Access to specialized adult congenital heart disease (ACHD) care remains limited given workforce shortages and geographic concentration of accredited centers in urban regions.

Project Rationale

Southwest Florida lacked a board-certified ACHD specialist despite a growing population of adults with congenital heart disease. Patients frequently traveled long distances for subspecialty evaluation, contributing to delays in care, fragmented follow-up, and inequitable access to specialized services.

Project Description

A regional hub-and-spoke model was developed through collaboration between Lee Health and Memorial Healthcare System to expand access to ACHD expertise. The spoke site established a locally based ACHD clinic embedded within pediatric cardiology clinic and staffed by an advanced practice provider. ACHD physicians from the accredited hub center were credentialed within the local system and provided teleconsultation, telehealth support, weekly multidisciplinary conferences, and monthly onsite collaborative clinics.

Take-Home Messages

Geographic and workforce disparities remain major barriers to equitable ACHD care. Hub-and-spoke models can extend specialized ACHD expertise into underserved regions.

Visual Summary

Visual Summary.

Hub-and-Spoke Model for Adult Congenital Heart Disease Care Delivery

This schematic illustrates an integrated hub-and-spoke model in which an ACHD-accredited center (hub) partners with a satellite clinic (spoke) to deliver coordinated, team-based care. ACHD = adult congenital heart disease; CHD = congenital heart disease; CPET = cardiopulmonary exercise test; CT = computed tomography; ECG = electrocardiogram; Echo = echocardiogram; EP = electrophysiology; GI = gastrointestinal; HF = heart failure; HR = heart rate; MDT = multidisciplinary team; MFM = maternal fetal medicine; MRI = magnetic resonance imaging; OB = obstetrics.

Advances in medical management and surgical techniques have resulted in a growing population of adults living with congenital heart disease (CHD), now exceeding the number of affected children.¹ Adults with CHD frequently have complex underlying anatomy and physiology, creating lifelong challenges related to residual lesions, limited durability of surgical repairs, and the development of acquired comorbidities. Providing effective care for this population requires clinicians with specialized knowledge of congenital anatomy, repaired and unrepaired physiologies, and late sequelae that may evolve over time. In contrast with the increasing demand, the number of board-certified adult congenital heart disease (ACHD) specialists remains limited, and workforce expansion has not kept pace with patient growth. Moreover, accredited ACHD centers are disproportionately concentrated in urban areas, creating substantial access barriers for patients residing in rural or underserved regions. These workforce and geographic limitations highlight the need for alternative care delivery strategies that extend specialized ACHD expertise beyond tertiary centers.

Take-Home Messages

• •Geographic, workforce, and resource-related disparities continue to limit access to specialized ACHD care, particularly for patients in underserved and rural regions.
• •Hub-and-spoke care models that combine local multidiscipline collaboration, telehealth, and shared EMR infrastructure can expand access to high-quality congenital heart disease care while improving continuity and multidisciplinary coordination.

Project Rationale

Not unlike many areas of the country, Southwest Florida faces persistent health disparities that disproportionately affect low-income and minority populations. There are no board-certified ACHD specialists within the region. Lee Health is a private, not-for-profit health system serving Southwest Florida and includes 4 adult hospitals and a single children's hospital. The system supports a noninvasive pediatric cardiology program staffed by pediatric cardiologists and congenital sonographers, with access to advanced imaging modalities. The broader cardiovascular service line includes adult interventional cardiology, electrophysiology, cardiothoracic surgery, and subspecialty programs such as heart failure, cardio-obstetrics, cardio-oncology, and noncongenital structural heart disease. Despite this breadth of services, Lee Health is located approximately 139 miles from an accredited ACHD center, Memorial Cardiac and Vascular Institute's program in Hollywood, Florida, creating a significant access gap for adults with CHD in the region.

In compliance with the Adult Congenital Heart Association's criteria for accreditation,² the Memorial Cardiac and Vascular Institute's program maintains a specialized multidisciplinary team led by 2 full-time, board-certified ACHD cardiologists and includes 3 congenital heart surgeons, 4 interventional cardiologists, adult and pediatric electrophysiologists, 2 advanced practice providers (APPs), 2 dedicated nurses, 2 dedicated navigators, and a social worker. The 2 cardiologists collaborate with multiple specialties including maternal fetal medicine, cardiac imaging, cardiac anesthesia, and other assorted services as needs arise.

Project Description

Recognition of the need for a dedicated ACHD program at Lee Health was driven by a growing local ACHD population resulting from both regional migration and pediatric patients aging into adulthood. In response, a hub-and-spoke model was implemented to establish an ACHD clinic within Lee Health with partnership from Memorial Healthcare System.

The resulting program centered on a locally based ACHD clinic embedded within the outpatient pediatric cardiology practice at Lee Health. The clinic was staffed by an APP with congenital cardiology expertise. ACHD physicians from Memorial Healthcare System were credentialed within the local system, enabling full electronic medical record (EMR) access, teleconsultation, and collaborative patient management. Monthly onsite joint clinics were established, during which an ACHD cardiologist traveled to the spoke location to evaluate patients collaboratively with the APP. Weekly multidisciplinary conferences allowed spoke-site patients to be reviewed jointly with the hub congenital heart team to guide diagnostic and therapeutic decision-making. Diagnostic support included congenital sonographers, pediatric cardiologists, advanced cardiovascular imaging, cardiopulmonary exercise testing, and stress testing. Structured referral and triage pathways stratified patients according to clinical complexity and facilitated coordinated testing, imaging review, and escalation to the hub center when advanced intervention was required.

Digital and operational tools support patient management and care coordination within the program. Telehealth and teleconsultation services facilitate ongoing collaboration between spoke and hub providers. EMR-based tools include a dedicated ACHD consultation order to streamline referrals, an EMR dashboard to track patient volume, follow-up needs, and hub referrals, and standardized ACHD note templates that document care plans. An EMR-integrated pregnancy care plan, supported by an institutional practice advisory, communicates individualized management plans for patients delivering locally. High-risk EMR flags alert emergency department and inpatient teams and prompt CHD consultation, while diagnosis-specific electronic health maintenance plans, such as Fontan pathways, generate guideline-based testing and imaging orders and identify care gaps.

Key stakeholders from pediatric cardiology, the cardiovascular service line, and the partnering Memorial Healthcare System ACHD hub were engaged early in program development. Hospital administration and legal teams collaborated to establish credentialing pathways for ACHD physicians within the local system.

Education, marketing, and outreach have been integral to program success. Educational initiatives include ACHD-focused continuing medical education, grand rounds, and case-based teaching for local cardiologists, obstetric providers, primary care clinicians, and trainees. The program engages internal medicine and family medicine residency programs and supports congenital cardiology rotations for cardiology fellows in the area. Marketing efforts include a dedicated institutional ACHD clinic webpage, social media promotion, targeted engagement with community cardiologists and primary care providers, and collaboration with local organizations and patient-centered groups.

Project Deliverables

• •Establishment of a regional ACHD spoke clinic embedded within existing pediatric cardiology and supported by existing cardiovascular services and maternal fetal medicine
• •Cross-credentialing of ACHD specialists across health care systems
• •Development of telehealth and teleconsultation workflows
• •Monthly collaborative onsite ACHD clinics with ACHD cardiologist
• •Weekly multidisciplinary case conferences with “hub” center
• •Standardized ACHD referral and triage pathways
• •EMR-integrated dashboards, documentation templates, and health maintenance pathways
• •ACHD pregnancy care plans and emergency department alerts
• •Educational initiatives targeting clinicians, trainees, and community providers
• •Regional outreach and patient engagement strategies

Project Outcome, Impact, and Future Directions/Next Steps

Program outcomes were tracked through EMR dashboards and clinic registries to monitor patient volume, referrals, and downstream care coordination. Since implementation, more than 245 adults with CHD have received care through the Lee Health ACHD clinic, significantly expanding access to specialized services within the 5-county region. The program also improved appropriate referral to advanced care when necessary. Among the patients evaluated locally, 21 were referred for catheter-based interventions, 13 for electrophysiology procedures, 8 for surgical interventions, and 9 for transplant evaluations. Additionally, 3 patients with modified World Health Organization class IV high-risk pregnancies were successfully identified and referred through the hub-and-spoke pathway for specialized management. These outcomes demonstrate improved identification of complex disease, timely referral to specialty care, and greater continuity of care for patients who previously lacked access to ACHD expertise. The sustained growth in patient volume and ongoing multidisciplinary collaboration indicate that the model is both feasible and durable in improving access to specialty care in underserved regions.

Planned initiatives include increasing outreach to community cardiologists and primary care clinicians to improve identification and referral of adults with CHD who remain disconnected from specialty care. Additional education and training opportunities for local clinicians and trainees will further strengthen local recognition of the program. Integration of structured transition programs will help ensure that pediatric CHD patients successfully transition into adult care within the regional system. Long-term goals include expanding the model to additional spoke sites across Southwest Florida and the surrounding regions, allowing more patients to access specialized congenital heart care without traveling long distances. By scaling this collaborative care model, the program aims to further reduce geographic inequities and improve long-term outcomes for adults living with CHD in the region.

Discussion

Geographic and sociodemographic disparities remain a major barrier to equitable ACHD care in the United States. National data indicate that approximately 45% to 50% of the U.S. population lives more than 1 hour from a regional ACHD center, with nearly 40% residing 1 to 4 hours away.³ These distance-related barriers disproportionately affect individuals with lower socioeconomic status, who are more likely to be uninsured, live below the federal poverty level, and have lower educational attainment.^1,3,4 Compounding these factors, fewer than half of ACHD patients receive care at specialized ACHD centers. Hub-and-spoke models may offer a scalable solution by decentralizing routine congenital care while preserving access to specialized expertise through coordinated multidisciplinary collaboration. Telehealth, EMR integration, and APP-led care coordination played central roles in the success of this model. These tools enhanced communication between institutions, improved continuity, and facilitated longitudinal management closer to patients' homes. Importantly, the model leveraged existing institutional strengths rather than requiring development of a fully independent ACHD center within the spoke region. This framework may be particularly valuable in geographically large or underserved regions where travel burdens contribute to gaps in congenital care. The model additionally highlights the expanding role of APPs within ACHD programs, particularly in care coordination, transition management, education, and longitudinal outpatient follow-up. Although challenges remain, including patient insurance limitations and inpatient management complexities, collaborative regional partnerships may represent an important strategy for improving equitable ACHD access nationally.

Conclusions

A regional hub-and-spoke model integrating telehealth, multidisciplinary collaboration, and APP-led local care successfully expanded access to specialized ACHD services in an underserved region. This approach may serve as a scalable framework for improving equitable ACHD care delivery in other geographic areas facing workforce and access limitations.

Funding Support and Author Disclosures

The authors have reported that they have no relationships relevant to the contents of this paper to disclose.