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Variations in practice in cardiac neurodevelopmental follow-up programs

Published online by Cambridge University Press:  23 October 2020

Thomas A. Miller*
Maine Medical Center, University of Utah, Portland, ME, USA
Anjali Sadhwani
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Jacqueline Sanz
Children’s National Health System, The George Washington University School of Medicine, Washington, DC, USA
Erica Sood
Nemours/Alfred I. duPont Hospital for Children, Thomas Jefferson University, Wilmington, DE, USA
Dawn Ilardi
Children’s Healthcare of Atlanta, Emory University, Atlanta, GA, USA
Jane W. Newburger
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Caren S. Goldberg
Division of Pediatric Cardiology, University of Michigan, Ann Arbor, MI, USA
David Wypij
Boston Children’s Hospital, Harvard Medical School, Harvard T.H. Chan School of Public Health, Boston, MA, USA
J. William Gaynor
Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Bradley S. Marino
Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Author for correspondence: Thomas A. Miller, Division of Pediatric Cardiology, Maine Medical Center, 22 Bramhall St, Portland, ME 04102, USA. Tel: +1 207 662 0111; Fax: 207 883 5552. E-mail:


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.

Original Article
© The Author(s), 2020. Published by Cambridge University Press

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