AHA Issues Congenital Heart Disease Guidelines

Laurie Barclay, MD

March 31, 2011

March 31, 2011 — Patients should be transitioned during early adolescence from pediatric to adult medical care for congenital heart disease (CHD), according to an American Heart Association (AHA) Scientific Statement reported online February 28 in Circulation. By continuing needed medical treatment throughout the lifespan of patients with CHD, a successful transition from pediatric to adult medical care should assist these patients in living long, high-quality, productive lives.

"Its not as simple as getting the name of a new doctor and going to see them when a patient turns 18," said Statement Committee co-chair Craig Sable, MD, FAHA, director of echocardiography and cardiology fellowship training at George Washington University Medical School in Washington, DC, in a news release. "There are multiple steps associated with the transition process that need to be started at a very young age, so that by the time these children become adults the process is well under way."

In 2008, the Statement Committee began researching literature on this transition process to identify the most effective practices used as an evidence base for their recommendations.

The Statement notes that CHD develops before birth and is the most prevalent birth defect. Because CHD is usually relatively mild and treatable, most patients survive into adulthood and carry out normal lives. Nonetheless, many patients with CHD require uninterrupted specialty care.

More than half of patients with CHD in the United States are now adults, with the total number rising exponentially and now exceeding 1 million. At least half of these patients may have complex CHD. Although the transition process from pediatric to adult care should ideally maintain treatment continuity while minimizing disruption and stress, fewer than 30% of adults with CHD receive care from qualified, trained specialists.

"The vast majority of the patients we see are not necessarily the most severe, so there's a real concern that some of the patients who really need care are not seeking it," Dr. Sable said. "The bottom line is to ensure that, as patients grow up, they receive the necessary care."

Specific Recommendations

Specific recommendations include the following:

  • To provide continuity of treatment in patients with CHD, the transition from pediatric to adult medical care should begin in early adolescence, usually when patients are aged 12 to 14 years. However, emotional maturity and developmental level, as opposed to chronologic age, should guide the timing of transition.

  • The healthcare provider — who is usually a pediatric cardiologist — the patient, and the patient's family should collaborate on this transition, although the provider should begin to direct health discussions more toward the adolescent than the parent. A transition resource binder and/or health "passport" should be prepared.

  • Adolescents should be asked privately about their understanding of their disease in relationship to their current health status, restrictions on activities, and future goals. Also, they should be encouraged to share their concerns regarding quality-of-life issues such as physical restrictions, school performance, and social relationships. If fears and concerns are identified, these should be acknowledged in an empathetic, nonjudgmental manner. Parents should also be asked about such issues.

  • Patients should have access to healthcare insurance and financing.

  • During the transition from pediatric to adult medical care, it is essential that patients select a primary care clinician who is an adult care physician to provide and coordinate comprehensive family and patient-centered care. The patient's "medical home" should reside with the primary care provider, who should maintain a confidential central record containing all pertinent information about the patient, including an up-to-date, comprehensive cardiac record prepared by the expert in adult CHD.

  • Adult care providers should be educated in management of CHD. Providers with expertise in performing follow-up studies and interpreting the data specific to CHD should carry out these procedures, both noninvasive and invasive. Follow-up at least annually is required to ensure that appropriate hemodynamics are maintained and that secondary complications are prevented.

  • Nonsurgical and surgical interventions must be geared to the specific patient and should be performed in centers with appropriate expertise. Before elective surgery, preoperative planning should involve experts in adult CHD, anesthesiology, and surgical services. This planning team should obtain and review the original operative and catheterization reports. An anesthesiologist familiar with the physiology associated with the patient's CHD should perform intraoperative management.

  • The primary care physician should offer counseling to adolescent patients regarding reproductive, genetic, and career planning.

  • Lines of communication should remain open between patients, families, and healthcare providers.

"Because increasing numbers of young people with complex congenital illnesses are surviving into adulthood, there is an urgent need for programs designed to facilitate their smooth movement from pediatric to adult healthcare environments," the statement authors conclude. "It is hoped that in the near future, transition programs will become the standard of care, making it more likely that patients with complex chronic illness can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives."

Circulation. Published online February 28, 2011. Full text

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