9
General Principles
Table 6. The Lifelong Trajectory of Improving Access to
ACHD Care
Key Issues at Each
Life Stage
Potentially Involved
Stakeholders Possible Solutions
Adulthood
(18 to 80+ years)
• Loss during transfer
to ACHD care
• Loss to care during
adulthood
• Insufficient
number of ACHD
cardiologists and
programs
• ACHD programs
• Adult care hospitals
• Social work
professionals
• Patients
• Governmental
agencies
• Medical education
and medical board
organizations
• ACHD advocacy
organizations
• Use electronic health records and
databases to track patients who
are lost to care and help navigate
back to CHD care.
• Engage resources to track
patients and identify barriers
to care.
• Consider innovative care options
such as telehealth.
• Partner with advance practice
providers and general
cardiologists, to provide local care.
• Increase the number and
geographic availability of
ACHD cardiologists.
ACHD indicates adult congenital heart disease; and CHD, congenital heart disease.
(cont'd)
3.1.1. Transition Education and Transfer of Care
COR LOE
Recommendations
1
A
1. All patients with congenital heart disease should receive
structured, patient-centered transition education that is age-,
sex-, gender-, and developmentally appropriate to improve
knowledge and reduce loss to care.
B-NR
1 B-NR
2. Congenital heart disease programs and clinicians should have
transfer-of-care policies and procedures to ensure effective
handoffs of patients from a pediatric to an ACHD cardiologist.
