Formal health care transition programs needed to provide uninterrupted support for youth with Kawasaki disease

Statement highlights:

• Kawasaki disease is the most common cause of acquired heart disease that develops in early childhood, creating inflammation in blood vessels, particularly heart arteries. It usually occurs before age 5 and is more common among children of Asian descent, although it affects children of all races and ethnicities. It can occur through adolescence (and rarely beyond), and the incidence of Kawasaki disease is 1.5 times higher among boys than girls.
• It is important to note that Kawasaki disease is not the same as multi-system inflammatory syndrome in children (MIS-C), a new condition identified this past year during the COVID-19 pandemic. While the two conditions have some overlapping symptoms, they also have some distinct differences including more profound inflammation and more gastrointestinal symptoms with MIS-C, and MIS-C is associated with COVID-19 infection.
• Prompt treatment of Kawasaki disease is critical to prevent significant heart problems, and most children recover fully with treatment. Although the cause of Kawasaki disease is unknown, it may be an immune response to an acute infectious illness based in part on genetic susceptibilities.
• A very small percentage of children may develop aneurysms (weakening or bulging of an artery wall) due to the inflammation of the coronary arteries caused by Kawasaki disease. Aneurysms increase the risk of blood clots in the coronary arteries, which may lead to a heart attack or cause life-threatening internal bleeding.
• An increasing number of children who developed coronary artery aneurysms from Kawasaki disease are becoming adults and require transitioning to adult health care. However, a poor transition to an adult health care team could reduce quality follow-up care, which can lead to an increased risk of complications and even death.
• A new American Heart Association scientific statement reviews the existing life-long risks and current guidelines for long-term care of children with Kawasaki disease and suggests that formal health care transition programs be established to ensure uninterrupted medical care for youth with Kawasaki disease, particularly those who may have developed aneurysms.
• In addition, the statement advises establishing formal health care transition training, research development and advocacy programs in support of the growing number of children with Kawasaki disease who are aging into adulthood and transitioning to adult medical care.
• Published today in the Journal of the American Heart Association, an open access journal of the American Heart Association, the  statement was written by a volunteer writing group on behalf of the American Heart Association’s Rheumatic Fever, Endocarditis, and Kawasaki Disease Committee of the Council on Lifelong Congenital Heart Disease and Heart Health in the Young (Young Hearts) and the Council on Arteriosclerosis, Thrombosis and Vascular Biology.