Summer 2008

Transitional Care for Congenital Heart Disease

The UCSF young adult congenital heart disease program, directed by Alison Knauth Meadows, M.D., Ph.D., is one of only a handful of such transition programs in the country.

Adult congenital heart disease (ACHD) is a relatively new but growing field, since it is only in the last couple of decades that children with these diseases have been surviving to adulthood. The program currently serves 40 patients between the ages of 18 and 25 by providing medical care, education and other services to aid in the transition from pediatric to adult cardiac care.

The goals of this transition program, which began in July 2007, are to provide uninterrupted follow-up health care, educate patients about their heart disease, promote skills in communication, decision making, self-care, self-advocacy and medical independence and maximize patients' quality of life and future potential.

"There are many patients with congenital heart disease who graduate from their pediatric cardiologist and are lost to follow-up," says Meadows, who is trained in both pediatric cardiology and the care of adults with congenital heart disease. "Many feel they have been 'fixed' and don't need follow-up. They are often asymptomatic from a cardiac perspective. Unfortunately, they all too commonly return in their mid-20s with residual problems that could have been prevented with careful follow-up."

When a patient is referred to the program, Meadows conducts a full medical evaluation. Meadows becomes the patient's primary cardiologist during his or her time in the program. Before a patient graduates from the program, a plan is made for future cardiac care in conjunction with the referring physician. Meadows determines whether an ACHD specialist, a pediatric cardiologist or an adult cardiologist is most appropriate. She continues as the primary ACHD specialist in many of the cases, particularly those with complex congenital heart disease.

"Part of my job is to make sure their future care is appropriate," says Meadows. "The approach for treating most heart conditions does not typically apply for patients with congenital heart disease. Many have complex anatomy and interventional histories, and will require specialized care."

The second component of the program is patient education. Meadows works closely with two nurse practitioners, Valerie Bosco and Elizabeth Tong, to provide this instruction. They meet with patients and their families, both together and independently. In these meetings, Meadows discusses issues the patients will face as adults, including possible future complications or risks, family planning and pregnancy, and lifestyle choices.

"This program is a one-stop shop because each patient receives a full medical evaluation, education and a comprehensive medical plan for the future," says Meadows.

She is also dedicated to keeping lines of communication open with each referring physician throughout the process. "I work closely with the referring physician to understand the patient's past—and often extensive—medical history," says Meadows. "Every patient is unique, and future care should be tailored appropriately."

For more information, contact Alison Knauth Meadows, M.D., Ph.D., at (415) 353-2008.

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