Top Things to Know: Falling Through the Cracks: The Current Gap in the Health Care Transition of Patients With Kawasaki Disease
Published: October 11, 2021
Prepared by Paul St. Laurent, DNP, RN, Sr. Science and Medicine Advisor, Lead
- Heath care transition (HCT), moving from a child to an adult model of healthcare, is a period of high vulnerability for patients with chronic childhood diseases.
- An increasing number of Kawasaki disease (KD) patients who developed medium and/or large coronary artery aneurysms are becoming adults and thus undergoing a HCT. A poor transition to an adult clinician represents a risk of loss to follow up, which can result in increasing morbidity and mortality.
- This Scientific Statement provides a summary of available literature and expert opinion pertaining to KD and HCT of children as they reach adulthood, reviews the existing life-long risks for KD patients, presents current guidelines for long-term care of KD patients, and offers guidance on assessment and preparation of KD patients for HCT.
- Establishing formal HCT programs for KD patients who developed aneurysms are important to ensure a smooth transition with uninterrupted medical care as these youths become adults.
- The Six Core Elements essential to a successful HCT include: 1) developing a policy or guide, 2) tracking/monitoring, 3) assessing readiness, 4) planning, 5) transfer of care, and 6) transition completion.
- Although much progress has been made in designing and implementing HCTs over the past decade, there are critical gaps in knowledge about their optimal implementation and effectiveness that must be addressed in future studies including: 1) evaluating the impact of HCTs from pediatric to adult health care; 2) studying transition outcomes in terms of population health and cost savings, and 3) surveying young adults about their experience with transferring to and integrating into adult care.
- A successful HCT program for KD patients is a multi-pronged approach that focuses on preparedness of the KD patient’s team that is referring the patients, the KD patient, the receiving team, and scientific societies and governing bodies.
- Patient preparedness to exit the pediatric healthcare system lies on a combined effort between the referring team, the patients and their parents.
- The receiving team’s preparedness is a combination of exchange with the transferring team and an educational strategy based on 1) focused training in KD, 2) setting a standardized practice workflow specific for KD health concerns, and 3) insuring access to coronary interventional specialists.
- The crowning effort of the HCT shall be fostered by major scientific societies and governing bodies by ensuring dedicated conferences addressing HCT of KD patients and support of research in this arena.
Citation
Dahdah N, Kung SC, Friedman KG, Marelli A, Gordon JB, Belay ED, Baker AL, Kazi DS, White P, Tremoulet A; on behalf of the American Heart Association Rheumatic Fever, Endocarditis, and Kawasaki Disease Committee of the Council on Lifelong Congenital Heart Disease and Heart Health in the Young; and Council on Arteriosclerosis, Thrombosis and Vascular Biology. Falling through the cracks: the current gap in the health care transition of patients with Kawasaki disease: a scientific statement from the American Heart Association. J Am Heart Assoc. 2021;10:e023310. DOI: 10.1161/JAHA.121.023310