Open Access

ARTICLE

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

by

1 Department of Pediatrics (Cardiology), University of Kentucky, Lexington, Kentucky, USA
2 Department of Pediatric Cardiology, University of Central Florida, Orlando, Florida, USA
3 Department of Pediatric Cardiology, Rush University Medical Center, Chicago, Illinois, USA
4 Department of Pediatric Cardiology, David Geffen School of Medicine at UCLA, Los Angeles, California, USA
5 Department of Pediatric Cardiology, Cleveland Clinic Foundation, Cleveland, Ohio, USA
6 Division of Pediatric Cardiology, Children’s Hospital of Orange County, Orange, California, USA
7 Department of Pediatric Cardiology, University of Michigan Health System, Ann Arbor, Michigan, USA
8 Department of Pediatric Cardiology, Wayne State University School of Medicine, Detroit, Michigan, USA
9 Department of Pediatric Cardiology, George Washington University, Washington, DC, USA
10 Department of Pediatric Cardiology, Cohen Children’s Medical Center of New York, Queens, New York, USA
11 Cardiology Care for Children, Lancaster, Pennsylvania, USA
12 Department of Cardiology, Children’s National Heart Institute, Arlington, Virginia, USA

* Corresponding Author: Juan Villafane, 743 East Broadway, Suite 300, Louisville, KY 40202. Email:

Congenital Heart Disease 2017, 12(6), 762-767. https://doi.org/10.1111/chd.12523

Abstract

Objective: The objective of this study was to develop quality metrics (QMs) relating to the ambulatory care of children after complete repair of tetralogy of Fallot (TOF).
Design: A workgroup team (WT) of pediatric cardiologists with expertise in all aspects of ambulatory cardiac management was formed at the request of the American College of Cardiology (ACC) and the Adult Congenital and Pediatric Cardiology Council (ACPC), to review published guidelines and consensus data relating to the ambulatory care of repaired TOF patients under the age of 18 years. A set of quality metrics (QMs) was proposed by the WT. The metrics went through a twostep evaluation process. In the first step, the RAND-UCLA modified Delphi methodology was employed and the metrics were voted on feasibility and validity by an expert panel. In the second step, QMs were put through an “open comments” process where feedback was provided by the ACPC members. The final QMs were approved by the ACPC council.
Results: The TOF WT formulated 9 QMs of which only 6 were submitted to the expert panel; 3 QMs passed the modified RAND-UCLA and went through the “open comments” process. Based on the feedback through the open comment process, only 1 metric was finally approved by the ACPC council.
Conclusions: The ACPC Council was able to develop QM for ambulatory care of children with repaired TOF. These patients should have documented genetic testing for 22q11.2 deletion. However, lack of evidence in the literature made it a challenge to formulate other evidence-based QMs.

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