JCCC Honors Journal


Lost in transition discusses the importance of follow-up care in regard to the pediatric patient with Congenital Heart Defect (CHD) transitioning to adult-centered care. Congenital heart defect affects approximately 8 out of 1,000 live births. More than 1 million adults are now living with CHD. Advances in medicine and surgery have allowed children born with CHD to live longer, fuller lives, necessitating proper care into adulthood. The American Heart Association as well as the American College of Cardiology has issued guidelines stating that adults with CHD be cared for in “Regional Centers For Excellence” with expertise in Adult Congenital Heart Disease. This concept is not a new one, however there is not a visible presence of a qualified "Center of Excellence" in our region, even though Kansas City is home to the only pediatric heart specialty hospital in a 150 county region. There are 11 centers participating in a two-year study hoping to make an impact on the education and treatment of this patient population, while learning why there are lapses in care for these adults. We must start by providing a place to go for resources and continue to be a support network for the transitioning patient.