8
Definitions and Classifications
Table 6. The Lifelong Trajectory of Improving Access to
ACHD Care
Key Issues at Each
Life Stage
Potentially Involved
Stakeholders Possible Solutions
Early childhood
(0 to 12 years)
• Patient/family
education
• Loss to care
• Children's hospitals
• Pediatric cardiolog y/
heart centers
• Social workers
• Patients and families
• Payors
• Congenital heart
disease advocacy
organizations
• Empower patients to stay in
congenital heart disease care, by
offering well-structured patient
and family education.
• Identify patient barriers for loss
to care; and add resources.
• Use electronic health records
and databases to track patients
who are lost to care—and to
help them navigate back to care.
Adolescence to young
adulthood (13 to 18
years)
• Transition
education
• Loss to care
• Children's hospitals
• Pediatric cardiolog y/
heart centers
• Social workers
• Patients and families
• Payors
• Congenital heart
disease advocacy
organizations
• Procure and deploy resources to
identify patients who are eligible
for pediatric-to-adult transition
education.
• Develop and implement
transition education.
• Use electronic health records
and databases to track patients
who are lost to care—and to
help them navigate back to care.
• Identify barriers to care to
navigate back to care.
Young adulthood
(18 to 26 years)
• Loss to care
• Transfer to ACHD
care
• Children's hospitals
• Pediatric cardiolog y/
heart centers
• Adult care hospitals
• ACHD providers
and programs
• Social workers
• Patients and families
• Payors
• ACHD advocacy
organizations
• Develop and implement
processes, policies, and resources
for successful transfer from
pediatric to adult care.
• Identify barriers to care.
• Use electronic health records
and databases to track patients
who are lost to care—and to help
them navigate back to care.
