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The long road to better ACHD care
1Cincinnati Children's Hospital Heart Institute, Cincinnati, Ohio 45229, USA. gary.webb@cchmc.org
Congenital Heart Disease
|June 26, 2010
Summary
Care for adults with congenital heart disease (CHD) in the U.S. is inadequate and requires significant improvement. Establishing well-funded regional centers and improving lifelong surveillance are crucial for better adult CHD outcomes.
Area of Science:
- Cardiology
- Public Health
- Healthcare Systems
Background:
- Pediatric congenital heart defect (CHD) care in the U.S. is excellent, but adult CHD (ACHD) care is fragmented and under-resourced.
- Existing ACHD clinics are often poorly funded, with few patients, and lack integration into larger cardiology programs.
- Training programs for ACHD caregivers are scarce, informal, and inadequately funded, contributing to a workforce shortage.
Discussion:
- The current system fails to meet the needs of the growing adult CHD population.
- There's a critical need for improved transition from pediatric to adult care, enhanced patient education, and standardized, high-quality surveillance.
- Lack of resources and training hinders the development of specialized ACHD care centers.
Key Insights:
- Establishing approximately 25 well-resourced regional ACHD centers is proposed to centralize expertise and improve care.
- Preventing patient loss to follow-up and ensuring lifelong, skilled care are paramount for positive outcomes.
- Strengthening the ACHD workforce through equivalent training and hiring standards as pediatric care is essential.
Outlook:
- Advocacy by patients, families, and professional organizations is needed to secure political and financial support for ACHD care.
- Demonstrating high-quality adult care and building credibility with stakeholders are vital for progress.
- The ultimate goal is to ensure all ACHD patients receive consistent, high-quality lifelong surveillance and care nationwide.
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