ACC Chapters Unite with the Adult Congenital Heart
Association to Improve the Care for ACHD Patients:
Provider Action for Treating Congenital Hearts (PATCH)
Pilot Program Chapter Opportunities
Current Facts about CHD
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CHD is the most common birth defect (1 out of 120 babies are born with a congenital heart disease) and survival
to adulthood, even the most complex of CHD, is now generally the rule.
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Today more than 90% of children receive successful congenital heart defect treatment and live to adulthood approximately two million adults and children in the U.S. now living with repaired and unrepaired congenital
heart defects, most with significant morbidity and early mortality.
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For the first time in history there are more adults than children living with CHD.
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ACHD is a disease that is cared for by the pediatric and adult cardiology community, not just by ACHD specialists,
of which there are not enough for this growing population.
Issues We Face
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Even the best CHD surgeries and repairs should not be considered ‘cures’ for congenital heart disease.
Many survivors of childhood surgery risk developing new problems as they age, including heart failure,
arrhythmias, vascular disease and the need for repeat structural intervention.
Since most internal medicine trained cardiologists did not receive detailed or specific training in CHD, the
anatomy, physiology, surgical repairs and expected findings of such disease are not familiar. As such, expert
guidelines state that at least half the adult CHD (ACHD) population should receive lifelong monitoring in
collaboration with specifically‐trained ACHD specialists.
Patients often perceive themselves as “fixed”, and most are not aware of the risks of new problems as they age.
Several studies report that up to 50% of families stop seeking cardiac care for their children by age 13, and less
than 10% of adults currently receive recommended special care.
With both a lack of patient and provider education, ACHD patients find themselves at increased risk for
premature disability and death. Death and disability rates rise dramatically by age 30.
There is a need for both a general infrastructure as well as adaptations at local levels to provide, assess and
improve coordination of team care between cardiologists and ACHD specialists
We need an increased awareness of the ACC/AHA guidelines for ACHD care and when referral to ACHD provider
is needed.
The ACC/ACHA Provider Action for Treating Congenital Hearts (PATCH) Program:
ACHA and ACC are working to collaborate on the PATCH Program to address four major challenges to the provision
of high quality coordinated ACHD care in the U.S.:
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Lack of educational resources specific to the complex needs of the ACHD population
Lack of awareness of ACHD care guidelines
Access to ACHD trained cardiologists and centers of excellence
Lack of networking between ACHD specialists and cardiologists
The PATCH Program’s Goals and Objectives:
With the help of ACC BOG, Chapters and the partnership with ACHA, the PATCH Program, a grant-funded initiative,
anticipates Developing new in‐person and remote CME activities as well as providing educational materials:
 PATCH Educators Listing: Identify and list expert educators regarding ACHD care;
 ACHD lectures at chapter meetings: Enlist local expert ACHD specialists to provide general ACHD lectures at
Chapter meetings.
 Webinars: Provide ACHD webinar lectures on related ACHD topics. Both timed webinars and banked webinars
will be produced and provided by the PATCH Educators.
 ACHD Toolkit: Information available to view, download and print from various web outlets (ACC ACPC, ACC
Chapter, ACHA)
 Description of need for PATCH program to provide collaboration between providers and patients
 Key Points for ACHD care on cards to provide at Chapter meetings and website location for more
information;
 ACC/AHA ACHD care guidelines;
 Lesion specific education;
 Webinar lecture announcements of upcoming and banked webinars;
 Link to ACHA materials, i.e. ACHD Program Directory and patient health passports;
 ACHD website links for more information (ACHA, ACPC, ISACHD).
 Networking opportunities: Regional conferences, summits or other opportunities to bring together pediatric
cardiologists with local cardiologists and ACHD specialists to provide life-long high quality CHD care.
 White paper publication: Promoting educational activities and collaborative networking between patients and
providers.
Will your chapter be a PATCH Pilot Chapter?
While our goal is to make this important program available to all chapters in the future, during this pilot program a
limited number of PATCH pilot chapters are being accepted. Pilot chapters are not required to make any financial
commitment, but will be asked to:
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Utilize their existing communications vehicles (email, e-newsletters, etc.) to communicate the message and tools
of the PATCH program to members;
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Include a PATCH Educator on the agenda of their annual meeting;
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Provide a space (exhibit table or other) for PATCH materials to be distributed at their annual meeting;
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Place a PATCH toolkit link on their chapter website;
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Market and encourage a) participation in PATCH regularly scheduled webinars, b) utilization of PATCH Educators
and programming in local grand rounds
If your Chapter would like to apply to be a PATCH Pilot Chapter, please contact Stephanie Mitchell at smitchel@acc.org
Adult Congenital Heart Association’s unique role in medical professional education: Although ACHA is a patient
advocacy organization, their mission includes helping CHD providers help patients. In 2008, ACHA convened its first CME
and research sessions, which were supported in part by funding from the NIH. ACHA currently lists over 1,200 ACHD
healthcare professional members, and works in close collaboration with the ACC and other professional associations. As
the voice of the consumer, ACHA has the unique ability to bring together diverse and sometimes competing groups of
healthcare providers to focus on how to put the needs of ACHD patients first. The ACHA leadership also ensures that the
patient voice is always represented, and that patient centered approaches remain integral to high‐quality ACHD care.