Related Experiment Video
Updated: Dec 4, 2025
Electroencephalographic Signal Acquisition Framework for Neurodiverse: A Case Study of Dolphin-Assisted Therapy
Published on: June 27, 2025
Variations in practice in cardiac neurodevelopmental follow-up programs
Thomas A Miller1, Anjali Sadhwani2, Jacqueline Sanz3
1Maine Medical Center, University of Utah, Portland, ME, USA.
Insights
Pediatric cardiac neurodevelopment programs vary significantly in structure and services. Many centers focus on early childhood evaluations, with less standardization for older children with congenital heart disease.
Area of Science:
- Pediatric Cardiology
- Neurodevelopmental Pediatrics
- Healthcare Management
Background:
- Congenital heart disease (CHD) impacts neurodevelopmental outcomes in children.
- Guidelines published in 2012 spurred the development of cardiac neurodevelopmental follow-up programs.
- Existing programs have developed independently, leading to potential variations in care.
Purpose of the Study:
- To characterize the structural and personnel variations in cardiac neurodevelopmental programs.
- To understand the current landscape of follow-up care for children with CHD.
Main Methods:
- A 31-item survey was distributed to member institutions of the Cardiac Neurodevelopmental Outcome Collaborative.
- Multidisciplinary teams at responding centers completed the survey.
- Responses from 23 of 29 invited centers (79% response rate) were compiled descriptively.
Main Results:
- Centers reported a median of 5 neurodevelopment visits from birth to 5 years, compared to 2 visits from 5 to 18 years.
- 53% of centers lacked standards for routine neurodevelopmental evaluations after age 5.
- Bayley Scales and Wechsler Scales were commonly used; neonatal clinical assessment was more frequent than brain imaging.
Conclusions:
- Formal cardiac neurodevelopment follow-up programs are established in response to clinical needs and guidelines.
- Significant variability exists in screening and testing approaches.
- Resources are often concentrated on younger pediatric patients, highlighting a need for improved care standardization for older children.
Abstract:
Over the last two decades, heart centres have developed strategies to meet the neurodevelopmental needs of children with congenital heart disease. Since the publication of guidelines in 2012, cardiac neurodevelopmental follow-up programmes have become more widespread. Local neurodevelopmental programmes, however, have been developed independently in widely varying environments. We sought to characterise variation in structure and personnel in cardiac neurodevelopmental programmes. A 31-item survey was sent to all member institutions of the Cardiac Neurodevelopmental Outcome Collaborative. Multidisciplinary teams at each centre completed the survey. Responses were compiled in a descriptive fashion. Of the 29 invited centres, 23 responded to the survey (79%). Centres reported more anticipated neurodevelopment visits between birth and 5 years of age (median 5, range 2-8) than 5-18 years (median 2, range 0-10) with 53% of centres lacking any standard for routine neurodevelopment evaluations after 5 years of age. Estimated annual neurodevelopment clinic volume ranged from 85 to 428 visits with a median of 16% of visits involving children >5 years of age. Among responding centres, the Bayley Scales of Infant and Toddler Development and Wechsler Preschool and Primary Scale of Intelligence were the most routinely used tests. Neonatal clinical assessment was more common (64%) than routine neonatal brain imaging (23%) during hospitalisation. In response to clinical need and published guidelines, centres have established formal cardiac neurodevelopment follow-up programmes. Centres vary considerably in their approaches to routine screening and objective testing, with many centres currently focussing their resources on evaluating younger patients.
