Related Experiment Video
Updated: Jun 19, 2026
Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Perceived barriers to neurodevelopmental follow-up among cardiac neurodevelopmental outcome collaborative
Faridis Serrano1, Elizabeth J Willen2, Estrella Mazarico de Thomas3
1Department of Pediatrics, Division of Critical Care Medicine, Baylor School of Medicine, Houston, TX, USA.
Insights
Barriers to neurodevelopmental follow-up for children with congenital heart disease (CHD) include distance and lack of understanding. Improving accessibility and education is crucial for under-represented minorities and non-English speakers.
Area of Science:
- Pediatric Cardiology
- Neurodevelopmental Pediatrics
- Health Equity
Background:
- Neurodevelopmental follow-up programs are vital for children with congenital heart disease (CHD) to identify impairments and guide interventions.
- The Cardiac Neurodevelopmental Outcome Collaborative's Diversity, Equity, and Inclusion Special Interest Group aimed to understand barriers to these programs.
Purpose of the Study:
- To assess perceived patient barriers to neurodevelopmental follow-up for children with CHD.
- To evaluate diversity and inclusion education within these programs.
- To gauge healthcare providers' confidence in caring for marginalized populations.
Main Methods:
- An online survey was distributed to members of the Cardiac Neurodevelopmental Outcome Collaborative.
- The survey collected data over a four-week period in April/May 2022.
Main Results:
- Eighty-four participants from 37 North American institutions responded.
- Key barriers identified include driving distance and caregiver understanding of the follow-up's importance.
- While cultural competency training is common, programs could improve accessibility for marginalized groups, particularly regarding language services and translated reports.
Conclusions:
- Significant barriers hinder neurodevelopmental follow-up for CHD patients, especially minorities and non-English speakers.
- Further family surveys are needed to identify solutions.
- Continued education on the importance of these programs is essential for improving patient outcomes.
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.
More Related Videos
08:42A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
08:13Development and Implementation of a Multi-Disciplinary Technology Enhanced Care Pathway for Youth and Adults with Concussion
Published on: January 20, 2019
