Transition from pediatric to adult cardiac care should start early

The process of transitioning pediatric cardiology patients into adult cardiac care should begin in late childhood or early adolescence, says Arwa Saidi, MD (pictured) department of internal medicine and pediatric cardiology, University of Florida. The 2008 American College of Cardiology/American Heart Association guidelines recommend preparing young people for the transition beginning at age 12.

“If you look at the transition as a long-term learning process, I actuallythink it should start earlier,” comments Dr. Saidi, who advocates educatingpediatric patients about their condition and need for future adult cardiologycare beginning at age 4 or 5.

One recent survey indicated that only 50 percent of adolescent cardiology patientsrecalled any health care provider discussing with them how their cardiac careneeds might change as they progress into adulthood. Furthermore, only 21 percentof the teenagers reported having any definite plan for transitioning into an adultcardiology clinic. This is especially problematic, Dr. Saidi says, consideringthat 63 percent of former pediatric patients allow cardiac care to lapse for morethan 2 years in adulthood, with the median duration of lapse in care being 10years.

Lapses in care can often occur for the unprepared cardiology patient as they enteradulthood already overwhelmed by responsibility and decision-making because theyhave previously been confronted by their morbidity and perhaps by their impendingdeath.

Dr. Saidi recommends starting to reinforce the young cardiology patient’sneed for continuous care before they reach school age, while also focusing onongoing education about their specific condition. Beginning at age 12, the ACC/AHAguidelines recommend that these patients start independent visits with their pediatriccardiologist, without parental attendance when possible. As the child grows older,they should be offered opportunities to make their own care decisions, for example,being able to decide when to have surgery based on their school or activity schedule.

Dr. Saidi also advises having the older adolescent visit the adult cardiologycenter and meeting the staff before it is time to transition. In keeping withthe new guidelines, whenever possible, no additional pediatric appointments shouldbe scheduled once the age of transition is reached.

There are resources available to help adolescents prepare for the transition. For patients who will be relocating for college, she recommends the Adult Congenital Heart Association website (http://www.achaheart.org/) as a starting point to help the patient find a new cardiology center.

The ACHA also has regional patient and family conferences and there are formaltraining clinics in some locations for patients ages 14 to 16. Pediatric practicesmay consider offering one-on-one nurse education to patients, Dr. Saidi says.