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Perceived barriers to neurodevelopmental follow-up among cardiac neurodevelopmental outcome collaborative institutional and affiliated members

Published online by Cambridge University Press:  10 March 2025

Faridis Serrano Open the ORCID record for Faridis Serrano [Opens in a new window] ,
Elizabeth J. Willen ,
Estrella Mazarico de Thomas ,
Danielle Guffey ,
Sarah Plummer Open the ORCID record for Sarah Plummer [Opens in a new window] ,
Caren S. Goldberg  and
Sonia Monteiro
Faridis Serrano*
Affiliation:
Department of Pediatrics, Division of Critical Care Medicine, Baylor School of Medicine, Houston, TX, USA
Elizabeth J. Willen
Affiliation:
Department of Pediatrics, Division of Developmental and Behavioral Health, Children’s Mercy Hospital, University of Missouri Kansas City School of Medicine, Kansas City, MO, USA
Estrella Mazarico de Thomas
Affiliation:
Department of Pediatrics, Division of Cardiology, Texas Children’s Hospital, Houston, TX, USA
Danielle Guffey
Affiliation:
Dan L. Duncan Institute for Clinical and Translational Research, Baylor College of Medicine, Houston, TX, USA
Sarah Plummer
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, University Hospitals Rainbow Babies and Children’s Hospital, Case Western Reserve University School of Medicine, Cleveland, OH, USA
Caren S. Goldberg
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, C.S. Mott Children’s Hospital, University of Michigan, Ann Arbor, MI, USA
Sonia Monteiro
Affiliation:
Department of Pediatrics, Division of Developmental Pediatrics, Baylor School of Medicine, Houston, TX, USA
*
Corresponding author: Faridis Serrano; Email: [email protected]
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Abstract

Objective:

Neurodevelopmental follow-up programmes for children with CHD help identify neurodevelopmental impairments and support the delivery of recommended interventions. The Cardiac Neurodevelopmental Outcome Collaborative, Diversity, Equity, and Inclusion Special Interest Group surveyed members to assess perceived patient barriers to neurodevelopmental follow-up, previous diversity and inclusion education, and confidence in caring for historically marginalised populations.

Methods:

A link to a Redcap online survey was emailed to Cardiac Neurodevelopmental Outcome Collaborative members on 23 April 2022, with 4 weeks given to complete.

Results:

Eighty-four participants from 37 institutions in North America completed the survey. Respondents acknowledged that education on the importance of neurodevelopmental follow-up and frequent accommodations for cancellations or rescheduling clinic visits is essential. Language interpretation and written materials were available in languages other than English, but a limited number provided fully translated evaluation reports. Driving distance and the caregiver’s lack of understanding of the rationale for neurodevelopmental follow-up were the top perceived barriers to programme attendance. At the institutional level, training for cultural competency was typically provided, and most respondents felt comfortable caring for patients from diverse backgrounds. However, many agreed their programmes could do more to make evaluations accessible to historically marginalised/underserved populations.

Conclusions:

Multiple barriers exist to cardiac neurodevelopmental follow-up, particularly for patients from under-represented minorities and for those whose primary language is not English. Surveying families will be valuable to understand how we may overcome these barriers. Further education about the importance of neurodevelopmental follow-up programmes continues to be essential.

Keywords

CHDneurodevelopmental outcomeshealth disparities
Type
Original Article
Information
Cardiology in the Young , Volume 35 , Issue 4 , April 2025 , pp. 756 - 762
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Copyright
© The Author(s), 2025. Published by Cambridge University Press

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