Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation

Cynthia M. Ortinau, Department of Pediatrics, Washington University of Medicine in St Louis School, St Louis, Missouri.
David Wypij, Departments of Cardiology.
Dawn Ilardi, Department of Neuropsychology, Children's Healthcare of Atlanta, Atlanta, Georgia.
Valerie Rofeberg, Departments of Cardiology.
Thomas A. Miller, Division of Cardiology, Maine Medical Center, Portland, Maine.
Janet Donohue, Department of Pediatrics, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan.
Garrett Reichle, Department of Pediatrics, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan.
Mike Seed, Divisions of Paediatric Cardiology.
Justin Elhoff, Division of Critical Care Medicine.
Nneka Alexander, Department of Neuropsychology, Children's Healthcare of Atlanta, Atlanta, Georgia.
Kiona Allen, Division of Cardiology, Department of Pediatrics, Ann and Robert H. Lurie Children's Hospital of Chicago, Northwestern Feinberg School of Medicine, Chicago, Illinois.
Corinne Anton, Department of Cardiology, Children's Health, Dallas, Texas.
Laurel Bear, Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin.
Gina Boucher, Phoenix Children's Hospital Heart Center, Phoenix, Arizona.
Jennifer Bragg, Department of Pediatrics, Mount Sinai Hospital, New York, New York.
Jennifer Butcher, Department of Pediatrics, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan.
Victoria Chen, Division of Developmental-Behavioral Pediatrics, Department of Pediatrics, Cohen Children's Medical Center, New Hyde Park, New York.
Kristi Glotzbach, Division of Critical Care Medicine, Department of Pediatrics, University of Utah, Salt Lake City, Utah.
Lyla Hampton, Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Caroline K. Lee, Department of Pediatrics, Washington University of Medicine in St Louis School, St Louis, Missouri.
Linh G. Ly, Neonatology.
Bradley S. Marino, Department of Pediatric Cardiology, Cleveland Clinic Children's, Cleveland, Ohio.
Yadira Martinez-Fernandez, Department of Cardiology, Nicklaus Children's Hospital, Miami, Florida.
Sonia Monteiro, Department of Pediatrics, Baylor School of Medicine, Houston, Texas.
Christina Ortega, Department of Psychology, Joe DiMaggio Children's Hospital, Hollywood, Florida.
Shabnam Peyvandi, University of California San Francisco Benioff Children's Hospital, San Francisco, California.
Heather Raiees-Dana, Arkansas Children's Heart Institute, Little Rock, Arkansas.
Caitlin K. Rollins, Neurology.
Anjali Sadhwani, Psychiatry and Behavioral Sciences, Boston Children's Hospital, Boston, Massachusetts.
Renee Sananes, Divisions of Paediatric Cardiology.
Jacqueline H. Sanz, Division of Neuropsychology, Children's National Hospital; Departments of Psychiatry and Behavioral Sciences and Pediatrics, The George Washington University School of Medicine, Washington, District of Columbia.
Amy H. Schultz, Division of Cardiology, Seattle Children's Hospital, University of Washington School of Medicine, Seattle, Washington.

Document Type

Journal Article

Publication Date

9-1-2023

Journal

Pediatrics

Volume

152

Issue

3

DOI

10.1542/peds.2022-060995

Abstract

BACKGROUND AND OBJECTIVES: Neurodevelopmental evaluation of toddlers with complex congenital heart disease is recommended but reported frequency is low. Data on barriers to attending neurodevelopmental follow-up are limited. This study aims to estimate the attendance rate for a toddler neurodevelopmental evaluation in a contemporary multicenter cohort and to assess patient and center level factors associated with attending this evaluation. METHODS: This is a retrospective cohort study of children born between September 2017 and September 2018 who underwent cardiopulmonary bypass in their first year of life at a center contributing data to the Cardiac Neurodevelopmental Outcome Collaborative and Pediatric Cardiac Critical Care Consortium clinical registries. The primary outcome was attendance for a neurodevelopmental evaluation between 11 and 30 months of age. Sociodemographic and medical characteristics and center factors specific to neurodevelopmental program design were considered as predictors for attendance. RESULTS: Among 2385 patients eligible from 16 cardiac centers, the attendance rate was 29.0% (692 of 2385), with a range of 7.8% to 54.3% across individual centers. In multivariable logistic regression models, hospital-initiated (versus family-initiated) scheduling for neurodevelopmental evaluation had the largest odds ratio in predicting attendance (odds ratio = 4.24, 95% confidence interval, 2.74-6.55). Other predictors of attendance included antenatal diagnosis, absence of Trisomy 21, higher Society of Thoracic Surgeons-European Association for Cardio-Thoracic Surgery mortality category, longer postoperative length of stay, private insurance, and residing a shorter distance from the hospital. CONCLUSIONS: Attendance rates reflect some improvement but remain low. Changes to program infrastructure and design and minimizing barriers affecting access to care are essential components for improving neurodevelopmental care and outcomes for children with congenital heart disease.

Department

Psychiatry and Behavioral Sciences

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