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Assessing enrollment of eligible infants in the national pediatric cardiology quality improvement collaborative (NPC-QIC) through linkage to the pediatric cardiac critical care consortium (PC4) registry

Published online by Cambridge University Press:  12 July 2023

Katherine E. Bates Open the ORCID record for Katherine E. Bates [Opens in a new window] ,
Janet Donohue ,
Wenying Zhang ,
Katherine Mikesell ,
Jeffrey B. Anderson ,
Michael Bingler ,
David W. Brown ,
Michael G. Gaies ,
Nancy Ghanayem  and
Linda M. Lambert
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Katherine E. Bates*
Affiliation:
Division of Pediatric Cardiology, Congenital Heart Center, C.S. Mott Children’s Hospital, University of Michigan Medical School, Ann Arbor, MI, USA
Janet Donohue
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Wenying Zhang
Affiliation:
Center for Healthcare Outcomes and Policy, University of Michigan, Ann Arbor, MI, USA
Katherine Mikesell
Affiliation:
Division of Pediatric Cardiology, Congenital Heart Center, C.S. Mott Children’s Hospital, University of Michigan Medical School, Ann Arbor, MI, USA
Jeffrey B. Anderson
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Michael Bingler
Affiliation:
Nemours Cardiac Center, Nemours Children’s Hospital, Orlando, FL, USA
David W. Brown
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Michael G. Gaies
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Nancy Ghanayem
Affiliation:
Department of Pediatrics, University of Chicago Comer Children’s Hospital and Advocate Children’s Hospital, Chicago, IL.
Linda M. Lambert
Affiliation:
Primary Children’s Hospital Heart Center, Salt Lake City, UT, USA
Sara K. Pasquali
Affiliation:
Division of Pediatric Cardiology, Congenital Heart Center, C.S. Mott Children’s Hospital, University of Michigan Medical School, Ann Arbor, MI, USA
David Schidlow
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Jeffrey Vergales
Affiliation:
Division of Pediatric Cardiology, University of Virginia, Charlottesville, VA, USA
Kurt R. Schumacher
Affiliation:
Division of Pediatric Cardiology, Congenital Heart Center, C.S. Mott Children’s Hospital, University of Michigan Medical School, Ann Arbor, MI, USA
*
Corresponding author: K. E. Bates; Email: kebates@med.umich.edu
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Abstract

Background:

The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) lacks a rigorous enrollment audit process, unlike other collaborative networks. Most centers require individual families to consent to participate. It is unknown whether there is variation across centers or biases in enrollment.

Methods:

We used the Pediatric Cardiac Critical Care Consortium (PC4) registry to assess enrollment rates in NPC-QIC for those centers participating in both registries using indirect identifiers (date of birth, date of admission, gender, and center) to match patient records. All infants born 1/1/2018–12/31/2020 and admitted 30 days of life were eligible. In PC4, all infants with a fundamental diagnosis of hypoplastic left heart or variant or who underwent a surgical or hybrid Norwood or variant were eligible. Standard descriptive statistics were used to describe the cohort and center match rates were plotted on a funnel chart.

Results:

Of 898 eligible NPC-QIC patients, 841 were linked to 1,114 eligible PC4 patients (match rate 75.5%) in 32 centers. Match rates were lower in patients of Hispanic/Latino ethnicity (66.1%, p = 0.005), and those with any specified chromosomal abnormality (57.4%, p = 0.002), noncardiac abnormality (67.8%, p = 0.005), or any specified syndrome (66.5%, p = 0.001). Match rates were lower for patients who transferred to another hospital or died prior to discharge. Match rates varied from 0 to 100% across centers.

Conclusions:

It is feasible to match patients between the NPC-QIC and PC4 registries. Variation in match rates suggests opportunities for improvement in NPC-QIC patient enrollment.

Keywords

Hypoplastic left heart syndromeQuality improvementCritical careHospitals
Type
Original Article
Information
Cardiology in the Young , Volume 34 , Issue 2 , February 2024 , pp. 373 - 379
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Copyright
© The Author(s), 2023. Published by Cambridge University Press

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