Circ: Congenital heart disease patients need 'uninterrupted' transitions of care

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The transition of congenital heart disease patients from pediatric to adult medical care should begin between the ages of 12 and 14, according to a scientific statement from the American Heart Association published in the Feb. 28 issue of Circulation.

"It's not as simple as getting the name of a new doctor and going to see him or her when a patient turns 18," said Craig Sable, MD, co-chair of the statement committee and director of echocardiography and cardiology fellowship training at Children's National Medical Center in Washington, D.C. "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."

The statement suggests that the process should be a joint effort between healthcare providers, the patient and the patient’s family.

The steps should include:

  • Selecting an adult care physician to provide and coordinate comprehensive care;
  • Offering reproductive and genetic career counseling;
  • Securing health insurance;
  • Educating adult care providers in managing heart disease; and
  • Maintaining communications between patients, families and healthcare professionals.

Because half of the patients affected with congenital heart disease make it to adulthood, the authors reiterated that patients need “specialized and uninterrupted” medical treatment, and said that a successful transitional process should minimize stress and manage treatment.

Currently, one-third of adults with these conditions do not receive care from qualified, trained specialists. The researchers noted that patients with congenital heart disease should have healthcare that includes age-appropriate education about the condition and promote communication, decision making, self-care and self-advocacy.

"It should foster greater personal and medical independence and a greater sense of
control over health, healthcare decisions and psychosocial environment," the authors noted. "The ultimate goal of a transition program is to optimize the quality of life, life expectancy and future productivity of young patients."

However, the authors noted that these types of transitional programs may be unavailable and difficult to develop. And while the authors reported that these transitions of care should begin between the ages of 12 and 14, they noted that a knowledge of the development states in adolescence and the impact of the chronic illness is imperative for a successful transition.

What are the three elements of a successful transition process?

  • Pretransition;
  • Transition; and
  • Transfer.

Part of the transitional process should include involving children in discussions about their diagnosis, medications, exercise restrictions and behaviors such as the risks of alcohol, smoking and drugs.

"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," Sable concluded. "The bottom line is to ensure that, as patients grow up, they receive the necessary care."

The authors offered that having a central provider—advanced practice nurse or physician assistant—present for the entire transitional process could work best to coordinate between pediatric and adult care teams. 

"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 illnesses can achieve their full potential under appropriate medical surveillance and live meaningful and productive lives," the authors concluded.