Cardiology Magazine — May-June 2012
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Cover Story
Gerard Martin


Congenital heart disease (CHD) is our nation’s number one birth defect, accounting for nearly 40,000 live births each year. Thanks to incredible advances in treatment and care over the last several decades, we can now say that there are more adults living with CHD than children. But there is still much more to do.

The College’ s 32nd Bethesda Conference in 2001 documented the successes and challenges facing CHD experts and patients. CHD patients die earlier; are hospitalized more; use more hospital resources; and typically have significant health problems carried over from childhood. In addition to their heart disease, CHD patients can have additional health issues including depression and anxiety.

They may also have neurocognitive defects and learning disabilities that can affect their abilities in the adult world. Within the ACC, the Adult Congenital Pediatric Cardiology (ACPC) Section has developed a structure to engage all CHD experts to address these issues that nearly two million U. S. CHD patients face.

One of the most important issues for ACHD patients is ensuring they have a plan to receive life-long specialized care. Barriers to developing a standardized approach to care and transition from pediatric care are related to the small number of adult congenital cardiology experts. Without enough experts, adult CHD patients are limited by when and where they can seek appropriate care. Because of this paucity, the ACPC Section encourages pediatric cardiologists and general cardiologists alike to collaborate with the adult congenital cardiologists. This collaboration is necessary to expand the expertise needed to care for the increasing population of CHD patients.

Without this collaboration, the challenge to ensure adults with CHD receive coordinated and continuous care throughout their lifetime will persist. The CHD community recognizes the need to educate their patients that CHD is repaired, not cured. Our challenge is to have a healthier adult population and link childhood care with adult care. The strategy is not just having CHD patients survive into adulthood, but to have adult CHD patients get in better shape and live longer healthier and productive lives.

The ACPC Section’s six work groups are populated with pediatric and adult congenital cardiologists to reflect the reality that CHD patients face life-long care. The section workgroups benefit from the perspective of cardiac care associates, surgeons, and CHD administrators. Still more important, is the ability to engage the non-congenital adult cardiologist in the discussions. CHD patients are children for 18 years, but they can be adult CHD patients for 60 or more years. ACPC section work groups in advocacy, quality, publications, education and training and clinical practice embrace the lifelong continuum aspect, as well as the insight each CHD team member brings. The section strives to promote collaborations with ACC’s activities, and learn from the successful team approach that many hospital and CHD clinics have developed.

I personally am very encouraged about the future of care for adult CHD patients. Not only are physicians recognizing the need for lifelong specialized care and the need for collaboration, but CHD patients are recognizing the importance of being involved in their own care as they move into adulthood. Moving forward, the College is also fortunate to have leading national patient advocacy groups such as the Adult Congenital Heart Association, Children’s Heart Foundation and Mended Little Hearts as involved partners in providing patient and physician resources.

There is still much work to do, but working together we can continue to make progress in the treatment of CHD patients all along the care continuum.

CHD Patient Says Building Relationships is Key to Successful Transition

Courtney Moore’s first heart surgery occurred when she was two days old – a coarctation of the aorta. Diagnosed at birth with Shone’s Complex, she underwent six surgeries by her 16th birthday. At age 22, she was implanted with a defibrillator, which was moved twice because of chronic pain. The defibrillator malfunctioned when she was 25 years old, shocking her eight times before it was removed. At age 28, her aortic valve was replaced.

Now almost 30, Moore lives in Maryland with her husband and 9-month-old son. She is the face of congenital heart disease (CHD) and its transition from pediatrics into adulthood. Usually treated by Karen S. Kuehl, MD, MPH, FACC, at Children’s National Medical Center in Washington, DC, but says there are times she must visit other hospitals for treatment now that she’s an adult.

“The care you receive is so different from what I am used to when I’m at another hospital,” said Moore. “I have such a great relationship with the doctors and nurses at Children’s – they know me and my condition. Having to stay at a different hospital with different doctors who don’t know me or my condition as well can be scary and make it hard to trust the other doctors.”

As a patient, Moore suggests physicians have a plan in place as patients get older. She says physicians not specializing in adult care should build relationships with other physicians who are, so when the time comes to transition to adult care their patients will be familiar with that doctor and trust him or her.

“Patients with CHD have strong relationships with their cardiologists and have been with them since the beginning, through very difficult and scary times in their lives,” said Moore. “The patient will need to feel like this new doctor will give him/her the care they need as they get older.”


By Kathy J. Jenkins, MD, MPH, FACC

The ACC’s Adult Congenital and Pediatric Cardiology (ACPC) Section was established in 2004 to address quality, education and advocacy issues facing the congenital heart disease (CHD) profession. The section, governed by the ACPC Council, is open to pediatric cardiologists, adult congenital cardiologists, cardiac care associates, including nurses, physician assistants, and other ancillary personnel, Fellows in Training (FITs), congenital heart surgeons and adult cardiologists.

To date, more than 1,200 ACC members are part of the section, with nearly 400 members actively contributing to activities designed to advance the care of both children and adults with CHD, as well as support the cardiac care professionals that serve them. Because of the commitment of ACPC section volunteers, the College is able to draw from the collective expertise of section members and address the educational and advocacy needs of the CHD community in a coordinated way – something that prior to the creation of the ACPC Council was difficult, if not impossible to do.

ACPC Section members are able to share their insights at section meetings, through email communication and participation in one of six work groups, (Advocacy, Adult CHD, Clinical Practice, Education and Training, Publications, and Quality). The ACC also affords opportunities to collaborate with our non-congenital colleagues on a variety of advocacy, education and quality activities.

Many of the activities noted in this issue of Cardiology, have benefited from the College’s expertise and interests. For example, the ACC’s Board of Governors and corresponding ACC chapters, have embraced the section’s efforts to increase education about care of the adult CHD patient through a national educational effort known as PATCH.(See page 21).

Several other ACPC Section activities are described in this issue. In 2012, the section will continue to focus on the following:

• Promoting the need for lifelong, specialized care of the adult CHD patient

• Enhancing activities for pediatric and congenital interventional cardiologists

• Engaging pediatric cardiac nurses, physician assistants and nurse practitioners to support patient-centered care and other activities

• Engaging pediatric cardiology and adult congenital chiefs and their CHD administrators

• Defining a CHD advocacy agenda specific to CHD stakeholders

Children born with CHD grow into adults with CHD and, as a result, a team of specialists that understand the lifelong needs of a CHD patient is essential. The ACPC Section provides unique opportunities to not only educate the entire cardiac care team about these needs, but also advocate for health policies that address the specialized needs of the CHD community. The section is also an important conduit for patient education about the need to seek and retain specialized care for life. Moving forward, aligning the needs of the CHD community with the broader goals of the cardiovascular community as a whole will ensure continued and rapid advances in CHD care.