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Increasing the reach of developmental services among children with congenital heart disease

Pediatric Research (2025)Cite this article

Neurodevelopmental impairments are among the most common and impactful morbidities for children with congenital heart disease (CHD).1 The American Heart Association (AHA) and the Cardiac Neurodevelopmental Outcome Collaborative (CNOC) recommend that children with CHD who meet specific high-risk criteria, including a history of cardiac surgery with cardiopulmonary bypass (CPB) during infancy, receive developmental evaluations across key developmental stages.1,2 While many pediatric cardiac centers in the United States (US) and Canada have established centralized neurodevelopmental follow-up programs for children with CHD, a recent analysis of the CNOC clinical registry indicates that only 29% of children who underwent cardiac surgery with CPB during infancy attended a developmental evaluation between 11 and 30 months of age, with distance from the hospital and insurance type among the predictors of attendance.3 In recognition that developmental evaluation through the cardiac center may not be accessible to all families, the 2024 AHA Scientific Statement notes that developmental evaluations may also be provided within primary care, through school, or in the community, while emphasizing the importance of communication and collaboration across the system of care.1 Indeed, a recent analysis of health care claims data in Maine, the US state with the second highest percentage of residents living in rural areas, found that most children with CHD who received developmental services typically did so in locations beyond their cardiac center, with no significant associations between rurality, the Childhood Opportunity Index, and insurance type and receipt of developmental services.4 However, rates of developmental service use were very low overall in this study, demonstrating the need to build partnerships between cardiac centers and local providers to increase the use of local resources to meet neurodevelopmental needs.

The Congenital Heart Disease Long-term Improvements in Functional hEalth (CHD LIFE) developmental care pathway in Queensland, Australia is an innovative state-wide model of care through which children with CHD who underwent cardiac surgery during infancy receive decentralized developmental surveillance within primary care and local community services. To support the implementation of this pathway within existing services in the local environment, a number of implementation strategies are used, from those targeting healthcare professionals (e.g., service referrals and electronic health record alerts) to those that are family-facing (e.g., online resources).5 These strategies also range from those designed to increase family demand for this care (e.g., parent education, reminder postcards) to data-based tracking systems to monitor reach of this care (e.g., centrally maintained database of eligible and consented children). Abell and colleagues (this issue) explored the perspectives of families and healthcare professionals on the implementation and impact of the CHD LIFE developmental care pathway.5 Families and healthcare professionals generally found the decentralized pathway to be acceptable and contextually appropriate, with several perceived impacts including increased developmental awareness for both providers and parents and timely identification of developmental impairments and access to intervention.

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Acknowledgements

J.P. was supported by a Mentored Patient-Oriented Research Career Development Award (K23DK125666) from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

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Authors and Affiliations

  1. Nemours Cardiac Center, Nemours Children’s Health, Wilmington, DE, USA

    Erica Sood

  2. Center for Healthcare Delivery Science, Nemours Children’s Health, Wilmington, DE, USA

    Erica Sood & Julia Price

  3. Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA

    Erica Sood & Julia Price

  4. Department of Pediatrics, MaineHealth, Scarborough, ME, USA

    Julia Price

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  1. Erica Sood
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  2. Julia Price
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Correspondence to Erica Sood.

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Sood, E., Price, J. Increasing the reach of developmental services among children with congenital heart disease. Pediatr Res (2025). https://doi.org/10.1038/s41390-025-04639-0

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