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Creating a lesion-specific “roadmap” for ambulatory care following surgery for complex congenital cardiac disease

Published online by Cambridge University Press:  04 July 2016

Gil Wernovsky*
The Heart Program at Nicklaus Children’s Hospital, Miami Children’s Health System, Miami, Florida, United States of America Herbert Wertheim College of Medicine, Florida International University, Miami, Florida, United States of America
Stacey L. Lihn
Sisters By Heart, Phoenix, Arizona; National Pediatric Cardiology Quality Improvement Collaborative, United States of America
Melissa M. Olen
The Heart Program at Nicklaus Children’s Hospital, Miami Children’s Health System, Miami, Florida, United States of America
Correspondence to: G. Wernovsky, Nicklaus Children’s Hospital, Miami Children’s Health System, 3100 SW 62nd Street, Miami, FL 33155, United States of America. Tel: +1 786 624 3278; Fax: +1 305 666 3078; E-mail:


Over the past 20 years, the successes of neonatal and infant surgery have resulted in dramatically changed demographics in ambulatory cardiology. These school-aged children and young adults have complex and, in some cases, previously unexpected cardiac and non-cardiac consequences of their surgical and/or transcatheter procedures. There is a growing need for additional cardiac and non-cardiac subspecialists, and coordination of care may be quite challenging. In contrast to hospital-based care, where inpatient care protocols are common, and perioperative expectations are more or less predictable for most children, ambulatory cardiologists have evolved strategies of care more or less independently, based on their education, training, experience, and individual styles, resulting in highly variable follow-up strategies. We have proposed a combination proactive–reactive collaborative model with a patient’s primary cardiologist, primary-care provider, and subspecialists, along with the patient and their family. The goal is to help standardise data collection in the ambulatory setting, reduce patient and family anxiety, increase health literacy, measure and address the non-cardiac consequences of complex cardiac disease, and aid in the transition to self-care as an adult.

Original Articles
© Cambridge University Press 2016 

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