198 - Improving the Long Term Neurodevelopmental Care for Children with Congenital Heart Disease

Poster Number: 198
Publication Number: 198.143

Tara L. Johnson, Arkansas Children's Hospital, Little Rock, AR, United States; Shruti Tewar, Arkansas Children's Hospital, Little Rock, AR, United States; Heather Raiees-Dana, Arkansas Children's Hospital, North Little Rock, AR, United States; Doreen Tooch, Arkansas Children's Hospital, Little Rock, AR, United States; Lawrence Greiten, Arkansas Children's Hospital, Little Rock, AR, United States; Brian Reemtsen, Arkansas Children's Hospital, :Little Rock, AR, United States; Kenneth Knecht, University of Arkansas for Medical Sciences College of Medicine, Little Rock, AR, United States

Background: Congenital heart disease (CHD) is the most common birth defect, affecting 1% of all live births in the United States. Because of recent advancements in surgical techniques, the survival of infants with critical CHD has greatly increased. These former critically-ill infants are disproportionately affected by neurodevelopmental disabilities (NDD), which are present in up to 75% of children with CHD. Because early intervention with proven therapies leads to better long-term outcomes, increasing efforts are being made towards early identification of NDD in infants and children with CHD.

Objective: We aim to improve the neurodevelopmental long-term care for children with CHD at Arkansas Children’s Hospital.
Phase 1: Improve the disciplinary care continuum of patients with CHD who are at risk for NDD by 20% by 12/31/2019.
Phase 2: Maintain the disciplinary care continuum at current rates during the COVID-19 pandemic through 12/31/2020.
Phase 3: Further improve the disciplinary care continuum by another 20% by 12/31/2021.

Design/Methods: In December 2018, a Neurodevelopmental Disabilities specialist joined the Arkansas Children’s Hospital Cardiac Neurodevelopmental Program (CNP) to evaluate a variety of children with CHD. The team identified key drivers for the growth of the program in Figure 1.

Sequential tests of change included the following: (1) raising awareness of program within our Cardiology Section (May 2019), (2) new program coordinator with ability to schedule high risk children at discharge from CVICU (July 2019), (3) programmatic change to see patients in conjunction with Cardiology visits due to COVID-19 pandemic (April 2020), (4) addition of Developmental and Behavioral Pediatrician (March 2021).

We performed intense data analysis in our specifically targeted population.

Results: The CNP clinic evaluated the following number of patients annually from 2018-2021: 73, 81, 100, and 139. Physician-only patient visits are shown in Figure 2. During Phases 1, 2, and 3, the number of outpatient visits increased by 43%, 32%, and 83%, respectively. The program has continued to grow in spite of the challenges brought on by the COVID-19 pandemic.Conclusion(s): We are evaluating more patients in the CNP, performing developmental surveillance, and using the results to make the appropriate referrals to developmental services. We are following these patients long-term to identify specific patterns of developmental delay in infants and children with CHD. We are continuing to grow the CNP at Arkansas Children’s Hospital to improve the long term neurodevelopmental care of children with CHD.
Figure 1. Key Driver Diagram.To determine how best to successfully implement our quality improvement project, we defined our global and smart aims, and we identified key drivers and interventions to improve the long term neurodevelopmental care of children with congenital heart disease.
Figure 2. Run Chart: Total number of children who were evaluated by a physician in outpatient visits per month within the Cardiac Neurodevelopmental Program.The number of outpatient CNP visits with a physician increased by 43% during Phase 1. In spite of an increased awareness amongst Cardiology providers (Test of Change #1), there was an initial 17% decrease in outpatient patient volume. At that time, there was no clinic coordinator to schedule new patients; when the new coordinator began her role (Test of Change #2), this problem was rectified, and outpatient clinic visits increased as shown. During Phase 2, with our COVID-19 clinic adjustments (Test of Change #3), our outpatient volumes further increased by 32% from our new baseline. During Phase 3, with the addition of another physician provider (Test of Change #4), our patient volumes increased further by 83%. Since the implementation of our quality improvement work, our monthly patient volumes have more than tripled.