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Variations in practice in cardiac neurodevelopmental follow-up programs

Part of: Hypoplastic Left Heart Syndrome (HLHS) Surgery

Published online by Cambridge University Press:  23 October 2020

Thomas A. Miller ,
Anjali Sadhwani ,
Jacqueline Sanz ,
Erica Sood ,
Dawn Ilardi ,
Jane W. Newburger ,
Caren S. Goldberg ,
David Wypij ,
J. William Gaynor  and
Bradley S. Marino
Thomas A. Miller*
Affiliation:
Maine Medical Center, University of Utah, Portland, ME, USA
Anjali Sadhwani
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Jacqueline Sanz
Affiliation:
Children’s National Health System, The George Washington University School of Medicine, Washington, DC, USA
Erica Sood
Affiliation:
Nemours/Alfred I. duPont Hospital for Children, Thomas Jefferson University, Wilmington, DE, USA
Dawn Ilardi
Affiliation:
Children’s Healthcare of Atlanta, Emory University, Atlanta, GA, USA
Jane W. Newburger
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Caren S. Goldberg
Affiliation:
Division of Pediatric Cardiology, University of Michigan, Ann Arbor, MI, USA
David Wypij
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Harvard T.H. Chan School of Public Health, Boston, MA, USA
J. William Gaynor
Affiliation:
Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Bradley S. Marino
Affiliation:
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: tamiller@mmc.org
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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.

Keywords

Congenital heart diseaseneurodevelopment
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 11 , November 2020 , pp. 1603 - 1608
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Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

Morton, PD, Ishibashi, N, Jonas, RA. Neurodevelopmental abnormalities and congenital heart disease: insights into altered brain maturation. Circ Res 2017; 120: 960–977.CrossRefGoogle ScholarPubMed
Ringle, ML, Wernovsky, G. Functional, quality of life, and neurodevelopmental outcomes after congenital cardiac surgery. Semin Perinatol 2016; 40: 556–570.CrossRefGoogle Scholar
Wernovsky, G, Newburger, J. Neurologic and developmental morbidity in children with complex congenital heart disease. J Pediatr 2003; 142: 6–8.CrossRefGoogle ScholarPubMed
McQuillen, PS, Goff, DA, Licht, DJ. Effects of congenital heart disease on brain development. Prog Pediatr Cardiol 2010; 29: 79–85.CrossRefGoogle ScholarPubMed
Klouda, L, Franklin, WJ, Saraf, A, Parekh, DR, Schwartz, DD. Neurocognitive and executive functioning in adult survivors of congenital heart disease. Congenit Heart Dis 2017; 12: 91–98.CrossRefGoogle ScholarPubMed
Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16 (Suppl 1): 92–104.CrossRefGoogle Scholar
Rollins, CK, Newburger, JW, Roberts, AE. Genetic contribution to neurodevelopmental outcomes in congenital heart disease: are some patients predetermined to have developmental delay? Curr Opin Pediatr 2017; 29: 529–533.CrossRefGoogle ScholarPubMed
Wernovsky, G, Licht, DJ. Neurodevelopmental outcomes in children with congenital heart disease – what can we impact? Pediatr Crit Care Med 2016; 17: S232–S242.CrossRefGoogle ScholarPubMed
Calderon, J, Stopp, C, Wypij, D, et al. Early-term birth in single-ventricle congenital heart disease after the Fontan procedure: neurodevelopmental and psychiatric outcomes. J Pediatr 2016; 179: 96–103.CrossRefGoogle ScholarPubMed
Gaynor, JW, Stopp, C, Wypij, D, et al. Neurodevelopmental outcomes after cardiac surgery in infancy. Pediatrics 2015; 135: 816–825.CrossRefGoogle ScholarPubMed
Goldberg, CS, Lu, M, Sleeper, LA, et al. Factors associated with neurodevelopment for children with single ventricle lesions. J Pediatr 2014; 165: 490–496.e498.CrossRefGoogle Scholar
Mahle, WT, Lu, M, Ohye, RG, et al. A predictive model for neurodevelopmental outcome after the Norwood procedure. Pediatr Cardiol 2013; 34: 327–333.CrossRefGoogle ScholarPubMed
Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 2012; 126: 1143–1172.CrossRefGoogle ScholarPubMed
Cardiac Neurodevelopmental Outcome Collaborative. Retrieved from http://www.cardiacneuro.org Google Scholar
Marelli, A, Miller, SP, Marino, BS, Jefferson, AL, Newburger, JW. Brain in congenital heart disease across the lifespan: the cumulative burden of injury. Circulation 2016; 133: 1951–1962.CrossRefGoogle ScholarPubMed
Brosig, C, Butcher, J, Butler, S, et al. Monitoring developmental risk and promoting success for children with congenital heart disease: recommendations for cardiac neurodevelopmental follow-up programs. Clin Pract Pediatr Psychol 2014; 2: 153–165.CrossRefGoogle Scholar
Spittle, A, Orton, J, Anderson, PJ, Boyd, R, Doyle, LW. Early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. Cochrane Database Syst Rev 2015: CD005495.CrossRefGoogle Scholar
McAnulty, GB, Duffy, FH, Butler, SC, Bernstein, JH, Zurakowski, D, Als, H. Effects of the Newborn Individualized Developmental Care and Assessment Program (NIDCAP) at age 8 years: preliminary data. Clin Pediatr (Phila) 2010; 49: 258–270.CrossRefGoogle ScholarPubMed
Symington, A, Pinelli, J. Developmental care for promoting development and preventing morbidity in preterm infants. Cochrane Database Syst Rev 2003: CD001814.CrossRefGoogle Scholar
Moddemann, D, Shea, S. The developmental paediatrician and neonatal follow-up. Paediatr Child Health 2006; 11: 295.Google ScholarPubMed
Sauve, R, Lee, SK. Neonatal follow-up programs and follow-up studies: historical and current perspectives. Paediatr Child Health 2006; 11: 267–270.Google ScholarPubMed
Evans, SW, Owens, JS, Wymbs, BT, Ray, AR. Evidence-based psychosocial treatments for children and adolescents with attention deficit/hyperactivity disorder. J Clin Child Adolesc Psychol 2018; 47: 157–198.CrossRefGoogle ScholarPubMed
Foorman, B, Dombek, J, Smith, K. Seven elements important to successful implementation of early literacy intervention. New Dir Child Adolesc Dev 2016; 2016: 49–65.CrossRefGoogle ScholarPubMed
Chambless, DL, Ollendick, TH. Empirically supported psychological interventions: controversies and evidence. Annu Rev Psychol 2001; 52: 685–716.CrossRefGoogle ScholarPubMed
Pasquali, SK, Li, JS, Burstein, DS, et al. Association of center volume with mortality and complications in pediatric heart surgery. Pediatrics 2012; 129: e370–e376.CrossRefGoogle ScholarPubMed
Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16 (S1): 92–104. doi: 10.1017/S1047951105002398 CrossRefGoogle Scholar