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Regional paediatric cardiac neurodevelopmental care: a survey of New England referral practices and institutional resources

Published online by Cambridge University Press:  11 August 2025

Madeline E. Duncan ,
Brooke Davey Open the ORCID record for Brooke Davey [Opens in a new window] ,
Jonathan Flyer ,
Susan Saleeb ,
Ruchika Karnik ,
Michael R. Epstein ,
Kristin Laraja ,
Jenifer A. Glatz  and
Thomas A. Miller Open the ORCID record for Thomas A. Miller [Opens in a new window]
Madeline E. Duncan
Affiliation:
Department of Cardiology, Boston Children’s Hospital and Department of Pediatrics Harvard Medical School, Boston, MA, USA
Brooke Davey
Affiliation:
Division of Pediatric Cardiology, Connecticut Children’s Medical Center, Hartford, CT, USA
Jonathan Flyer
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, The Robert Larner, M.D. College of Medicine at The University of Vermont, Burlington, VT, USA
Susan Saleeb
Affiliation:
Department of Cardiology, Boston Children’s Hospital and Department of Pediatrics Harvard Medical School, Boston, MA, USA
Ruchika Karnik
Affiliation:
Department of Pediatrics, Section of Pediatric Cardiology, Yale School of Medicine, New Haven, CT, USA
Michael R. Epstein
Affiliation:
Division of Pediatric Cardiology, Northern Light Eastern Maine Medical Center, Bangor, ME, USA
Kristin Laraja
Affiliation:
Division of Pediatric Cardiology, University of Massachusetts Chan Medical School, Worcester, MA, USA
Jenifer A. Glatz
Affiliation:
Division of Pediatric Cardiology, Geisel School of Medicine at Dartmouth, Hanover, NH, USA
Thomas A. Miller*
Affiliation:
Division of Pediatric Cardiology, Maine Medical Center, Portland, ME, USA
*
Corresponding author: Thomas A. Miller; Email: thomas.a.miller@mainehealth.org
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Abstract

Background:

Reports of paediatric cardiac neurodevelopmental programmes are predominately limited to high-volume surgical centres. Regional characterisation of neurodevelopmental care practices across multiple centres both with and without cardiac surgery programmes has not yet been described.

Objective:

Assess cardiac neurodevelopmental infrastructure and approach across New England to describe regional support for children with CHD.

Methods:

A 16-item survey assessing inpatient and outpatient neurodevelopmental care practices was sent electronically via REDCap to all member institutions of the New England Congenital Cardiology Association Health Disparities Working Group. Centres were characterised by surgical capability, annual volume, and academic affiliation. Descriptive statistics and Fisher’s exact test were used for comparisons.

Results:

The survey response rate was 90% (9/10). Participating centres included non-surgical academic centres (55%), small surgical centres (22%) and medium-large surgical centres (22%). Surgical centres typically refer their patients to internal neurodevelopmental services (100%) and rely on automatic referral processes (100%). Non-surgical centres predominately refer to the institution where cardiac surgery was performed (80%) compared to engaging local teams (20%) and depend on family or physician-initiated referral (100%) to schedule neurodevelopmental services. While none of the non-surgical centres surveyed have cardiac-specific neurodevelopmental programmes, all have other developmental programmes that accommodate children with CHD.

Conclusions:

Varying neurodevelopmental infrastructure and resources are reported across New England. Academic, non-surgical centres may have infrastructure for neurodevelopmental follow-up despite not having cardiac neurodevelopmental programmes. Collaboration between surgical and non-surgical cardiac centres in New England may be leveraged to promote neurodevelopmental care closer to home.

Keywords

CHDcardiac neurodevelopmentregionalisation

Information

Type
Original Article
Information
Cardiology in the Young , Volume 35 , Issue 7 , July 2025 , pp. 1350 - 1356
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Copyright
© The Author(s), 2025. Published by Cambridge University Press

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