The Need
New technologies and medical advances have changed the life expectancy of children born with CHD, enabling the vast majority to survive into adulthood. Over the last 25 years advances in treatment have enabled half a million U.S. children with complex heart defects to survive into adulthood. About 35,000 infants (1 out of every 125) are born with heart defects each year in the United States . Heart defects are among the most common birth defects and are the leading cause of birth defect-related deaths . However, advances in diagnosis and surgical treatment have led to dramatic increases in survival for children with serious heart defects. In the United States today, about 1.4 million children and adults live with congenital heart defects (CHD) . Almost all are able to lead active, productive lives. These facts create new demands on the organization for different approaches to building awareness, conducting research, and setting standards of quality for lifelong continuous care.
The conventional approaches to medical care for adults living with CHD and traditional frameworks for collaboration among pediatric and adult cardiologists and between patients and the medical community are increasingly challenged by a rapidly changing scientific, social, and economic environment, and the rapid entry of new actors, technologies, and institutions. For barriers to patient empowerment to be removed and enablers to be established in their place, a vast web of individuals, medical facilities, leaders in the field and their associations must unite to enact real quality metrics and policy measures which bridge social capital and generate professional competence.
The Working Groups
The first working groups established were predicated on four fundamental principles:
- Quality care should be consistent and definable within and across institutions and there should be a mechanism to communicate to the consumer which institutions meet the quality standards.
- Care for adults with CHD should be age appropriate, comprehensive and integrated.
- The workforce required to meet the needs of adults with CHD should be appropriately trained in the field and to ensure quality their numbers should be adequate to address the growing need.
- Centers to treat ACHD should be able to generate revenue in ways that maintain quality care and provide a viable business model for the larger institution.
To be forward thinking around these four principles, four initial working groups were established to develop the recommendations contained in this document. The Working Groups and their charters are:
- Program Accreditation. Establish standards and metrics to create a credentialing system for ACHD programs.
- Regional Care Planning. Establish care networks that facilitate collaboration and integration of service delivery.
- Workforce Planning. Identify strategies to rapidly expand the workforce of trained ACHD care providers.
- Business Model Development. Develop successful business models to promote the development of ACHD care within the current reimbursement system.
RECOMMENDATIONS
The recommendations from each working group follow. Each working group has provided recommendations for what ACHA should do to move the field toward the specific vision within each area. The recommendations include specific actions, leverage points, and strategic partnerships that should be undertaken to catalyze change in the specific area with ACHA acting as the catalyst.
Together these recommendations define an approach to ACHD care that is regional utilizing a business model that is sustainable and profitable with the right workforce to deliver quality care and an accreditation system that certifies a quality delivery system.
To view each recommendations, please select the working group under the “pages” section in the upper right of the screen.
