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

Abstract

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.

Development of quality metrics for ambulatory care in pediatric patients with tetralogy of Fallot

“…No uniform approach exists for the postoperative ambulatory care of children with TOF in part, due to: (1) absence of longitudinal studies in this age group and (2) variability of the outpatient management from institution to institution. Wernovsky et al, provided a framework for outpatient follow‐up of complex CHD based on a review of published literature, the experience of a single academic center, and a national quality improvement collaboration . A group from Cincinnati Children's Hospital Medical Center developed a set of recommendations for follow‐up of TOF patients.…”

“…This QM was based on the WT consensus as there was no specific standard on the timing of postoperative outpatient visits for TOF pediatric patients, especially during infancy. The ACC/AHA 2008 and other guidelines recommended at least annual follow‐up for older patients with TOF . This QM failed to be approved due to insufficient scientific data to support specific timing intervals for follow‐up visits.…”

“…The ACC/AHA 2008 and other guidelines recommended at least annual follow-up for older patients with TOF. 5,6,[12][13][14]16 This QM failed to be approved due to insufficient scientific data to support specific timing intervals for follow-up visits.…”

Perioperative enhancement for CHD patients

“…We applaud Wernovsky et al for sharing what we strongly support as excellent guidelines for standardised testing and coordinated surveillance of patients with complex CHD 1 . In the United States of America, there are currently more adults than children living with CHD, and projections indicate that this population will continue to grow 2 …”

Design and initial results of a programme for routine standardised longitudinal follow-up after congenital heart surgery

“…Although Wernovsky et al have developed useful guidelines regarding the time frame for regular outpatient follow-up clinic visits and testing for patients who may be followed at an individual centre, there are no current standards or recommendations regarding the collection of longitudinal outcomes data across all patients, including those who may receive follow-up care elsewhere. [3][4][5] Third, with the ever-increasing requirements and pressures to participate in data collection for various research, quality improvement, and performance measurement initiatives, there may be limited resources to support additional data collection capabilities. Finally, to date, there has been limited engagement with patients and families in spearheading longitudinal data collection efforts.…”