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The origins and development of the Cardiac Neurodevelopmental Outcome Collaborative: creating innovative clinical, quality improvement, and research opportunities

Part of: Surgery Hypoplastic Left Heart Syndrome (HLHS)

Published online by Cambridge University Press:  03 December 2020

Bradley S. Marino ,
Erica Sood ,
Adam R. Cassidy ,
Thomas A. Miller ,
Jacqueline H. Sanz ,
David Bellinger ,
Jane Newburger  and
Caren S. Goldberg
Bradley S. Marino*
Affiliation:
Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Erica Sood
Affiliation:
Nemours Cardiac Center, Alfred I. duPont Hospital for Children, Wilmington, DE, USA Department of Pediatrics, Thomas Jefferson University, Philadelphia, PA, USA
Adam R. Cassidy
Affiliation:
Department of Psychiatry, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Thomas A. Miller
Affiliation:
Department of Pediatrics, Maine Medical Center, Portland, ME, USA
Jacqueline H. Sanz
Affiliation:
Division of Neuropsychology, Children’s National Hospital, Departments of Psychiatry and Behavioral Sciences & Pediatrics, George Washington University School of Medicine, Washington, DC, USA
David Bellinger
Affiliation:
Department of Psychiatry, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA Department of Neurology, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Jane Newburger
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Caren S. Goldberg
Affiliation:
Department of Pediatrics, University of Michigan, C.S. Mott Childrens Hospital, Ann Arbor, MI, USA
*
Author for correspondence: Bradley S. Marino, MD, MPP, MSCE, Professor Pediatrics, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Division of Cardiology, 225 East Chicago Avenue, Box 21, Chicago, IL 60611-2991, USA. Tel: +1 312 227 4373; Fax: 312-227-9640. E-mail: bradley.marino@northwestern.edu
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Abstract

Compared to the general population, individuals with complex congenital heart disease are at increased risk for deficits in cognitive, neurodevelopmental, psychosocial, and physical functioning, resulting in a diminished health-related quality of life. These deficits have been well described over the past 25 years, but significant gaps remain in our understanding of the best practices to improve neurodevelopmental and psychosocial outcomes and health-related quality of life for individuals with paediatric and congenital heart disease. Innovative clinical, quality improvement, and research opportunities with collaboration across multiple disciplines and institutions were needed to address these gaps. The Cardiac Neurodevelopmental Outcome Collaborative was founded in 2016 with a described mission to determine and implement best practices of neurodevelopmental and psychosocial services for individuals and their families with paediatric and congenital heart disease through clinical, quality improvement, and research initiatives. The vision is to be a multi-centre, multi-national, multi-disciplinary group of healthcare professionals committed to working together and partnering with families to optimise neurodevelopmental outcomes for individuals with paediatric and congenital heart disease through clinical, quality, and research initiatives, intending to maximise quality of life for every individual across the lifespan. This manuscript describes the development and organisation of the Cardiac Neurodevelopmental Outcome Collaborative.

Keywords

Congenital heart diseaseneurodevelopmental outcomespsychosocial outcomesquality of lifequality improvement

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Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 11 , November 2020 , pp. 1597 - 1602
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Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

Oster, M, Lee, K, Honein, M, Riehle-Colarusso, T, Shin, M, Correa, A. Temporal trends in survival among infants with critical congenital heart defects. Pediatrics 2013; 131: e1502–e1508.CrossRefGoogle ScholarPubMed
Triedman, J, Newburger, J. Trends in congenital heart disease. Circulation 2016; 133: 2716–2733.10.1161/CIRCULATIONAHA.116.023544CrossRefGoogle ScholarPubMed
Gilboa, S, Devine, O, Kucik, J, et al. Congenital heart defects in the United States. Circulation 2016; 134: 101–109.CrossRefGoogle ScholarPubMed
Newburger, J, Wypij, D, Bellinger, D, et al. Length of stay after infant heart surgery is related to cognitive outcome at age 8 years. J Pediatr 2003; 143: 67–73.10.1016/S0022-3476(03)00183-5CrossRefGoogle ScholarPubMed
Marino, B, Lipkin, P, Newburger, J, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management. Circulation 2012; 126: 1143–1172.CrossRefGoogle ScholarPubMed
Marino, B, Tomlinson, R, Wernovsky, G, et al. Validation of the pediatric cardiac quality of life inventory. Pediatrics 2010; 126: 498–508.CrossRefGoogle ScholarPubMed
Wray, J, Brown, K, Franklin, R, Cassedy, A, Marino, B. Assessing the generalisability of the pediatric cardiac quality of life inventory in the United Kingdom. Cardiol Young 2013; 24: 220–228.CrossRefGoogle ScholarPubMed
Mellion, K, Uzark, K, Cassedy, A, et al. Health-related quality of life outcomes in children and adolescents with congenital heart disease. J Pediatr 2014; 164: 781–788.e1.CrossRefGoogle ScholarPubMed
Marelli, A, Miller, S, Marino, B, Jefferson, A, Newburger, J. Brain in congenital heart disease across the lifespan. Circulation 2016; 133: 1951–1962.CrossRefGoogle ScholarPubMed
McQuillen, PS, Barkovich, AJ, Hamrick, SEG, et al. Temporal and anatomic risk profile of brain injury with neonatal repair of congenital heart defects. Stroke 2007; 38: 736–741.CrossRefGoogle ScholarPubMed
Goldberg, C, Lu, M, Sleeper, L, et al. Factors associated with neurodevelopment for children with single ventricle lesions. J Pediatr 2014; 165: 490–496.e8.CrossRefGoogle ScholarPubMed
Dimitropoulos, A, McQuillen, PS, Sethi, V, et al. Brain injury and development in newborns with critical congenital heart disease. Neurology 2013; 81: 241–248.CrossRefGoogle ScholarPubMed
Marino, BS. New concepts in predicting, evaluating, and managing neurodevelopmental outcomes in children with congenital heart disease. Curr Opin Pediatr 2013; 25: 574–584.CrossRefGoogle ScholarPubMed
Clouchoux, C, du Plessis, AJ, Bouyssi-Kobar, M, et al. Delayed cortical development in fetuses with complex congenital heart disease. Cerebral Cortex 2013; 23: 2932–2943.CrossRefGoogle ScholarPubMed
Licht, D, Shera, DM, Clancy, RR, et al. Brain maturation is delayed in infants with complex congenital heart defects. J Thorac Cardiovasc Surg 2009; 137: 529–537.CrossRefGoogle ScholarPubMed
Rivkin, MJ, Watson, CG, Scoppettuolo, LA, et al. Adolescents with D-transposition of the great arteries repaired in early infancy demonstrate reduced white matter microstructure associated with clinical risk factors. J Thorac Cardiovasc Surg 2013; 146: 543–549.e1.CrossRefGoogle ScholarPubMed
Peyvandi, S, Kim, H, Lau, J, et al. The association between cardiac physiology, acquired brain injury, and postnatal brain growth in critical congenital heart disease. J Thorac Cardiovasc Surg 2018; 155: 291–300.e3.10.1016/j.jtcvs.2017.08.019CrossRefGoogle ScholarPubMed
Easson, K, Rohlicek, CV, Houde, JC, et al. Quantification of apparent axon density and orientation dispersion in the white matter of youth born with congenital heart disease. Neuroimage 2020; 205: 116255.CrossRefGoogle ScholarPubMed
Watson, CG, Stopp, C, Newburger, JW, Rivkin, MJ. Graph theory analysis of cortical thickness networks in adolescents with D-transposition of the great arteries. Brain Behav 2018; 8: e00834.CrossRefGoogle ScholarPubMed
Beca, J, Gunn, J, Coleman, L, et al. New white matter brain injury after infant heart surgery is associated with diagnostic group and the use of circulatory arrest. Circulation 2013; 127: 971–979.CrossRefGoogle ScholarPubMed
Peyvandi, S, Chau, V, Guo, T, et al. Neonatal brain injury and timing of neurodevelopmental assessment in patients with congenital heart disease. J Am Coll Cardiol 2018; 71: 1986–1996.CrossRefGoogle ScholarPubMed
Lynch, JM, Ko, T, Busch, DR, et al. Preoperative cerebral hemodynamics from birth to surgery in neonates with critical congenital heart disease. J Thorac Cardiovasc Surg 2018; 156: 1657–1664.CrossRefGoogle ScholarPubMed
Graham, EM, Martin, RH, Atz, AM, et al. Association of intraoperative circulating-brain injury biomarker and neurodevelopmental outcomes at 1 year among neonates who have undergone cardiac surgery. J Thorac Cardiovasc Surg 2019; 157: 1996–2002.CrossRefGoogle ScholarPubMed
Hansen, JH, Rotermann, I, Logoteta, J, et al. Neurodevelopmental outcome in hypoplastic left heart syndrome: impact of perioperative cerebral tissue oxygenation of the Norwood procedure. J Thorac Cardiovasc Surg 2016; 151: 1358–1366.CrossRefGoogle ScholarPubMed
Andropoulos, DB, Ahmad, HB, Haq, T, et al. The association between brain injury, perioperative anesthetic exposure, and 12-month neurodevelopmental outcomes after neonatal cardiac surgery: a retrospective cohort study. Paediatr Anaesth 2014; 24: 266–274.CrossRefGoogle ScholarPubMed
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
Homsy, J, Zaidi, S, Shen, Y, et al. De novo mutations in congenital heart disease with neurodevelopmental and other congenitalanomalies. Science 2015; 350: 1262–1266.CrossRefGoogle Scholar
Gaynor, J, Wernovsky, G, Jarvik, G, et al. Patient characteristics are important determinants of neurodevelopmental outcome at one year of age after neonatal and infant cardiac surgery. J Thorac Cardiovasc Surg 2007; 133: 1344–1353.e3. CrossRefGoogle ScholarPubMed
Butler, S, Sadhwani, A, Stopp, C, et al. Neurodevelopmental assessment of infants with congenital heart disease in the early postoperative period. Congenit Heart Dis 2018; 14: 236–245.CrossRefGoogle ScholarPubMed
Shillingford, A, Glanzman, M, Ittenbach, R, Clancy, R, Gaynor, J, Wernovsky, G. Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease. Pediatrics 2008; 121: e759–e767.CrossRefGoogle Scholar
Bean Jaworski, J, White, M, DeMaso, D, Newburger, J, Bellinger, D, Cassidy, A. Visuospatial processing in adolescents with critical congenital heart disease: organization, integration, and implications for academic achievement. Child Neuropsychol 2017; 24: 451–468.CrossRefGoogle ScholarPubMed
Bellinger, D, Watson, C, Rivkin, M, et al. Neuropsychological status and structural brain imaging in adolescents with single ventricle who underwent the Fontan procedure. J Am Heart Assoc 2015; 4: e002302.10.1161/JAHA.115.002302CrossRefGoogle ScholarPubMed
Bellinger, D, Wypij, D, Rivkin, M, et al. Adolescents with D-transposition of the great arteries corrected with the arterial switch procedure. Circulation 2011; 124: 1361–1369.CrossRefGoogle ScholarPubMed
Gerstle, M, Beebe, DW, Drotar, D, Cassedy, A, Marino, BS. Executive functioning and school performance among pediatric survivors of complex congenital heart disease. J Pediatr 2016; 173: 154–159.CrossRefGoogle ScholarPubMed
Monti, JD, Jackson, JL, Vannatta, K. Adolescents and young adults living with congenital heart disease: coping, stress reactivity, and emotional functioning. J Clin Psychol Med Settings 2018; 25: 441–451.CrossRefGoogle Scholar
Mussatto, KA, Sawin, KJ, Schiffman, R, Leske, J, Simpson, P, Marino, BS. The importance of self-perceptions to psychosocial adjustment in adolescents with heart disease. J Pediatr Health Care 2014; 28: 251–261.10.1016/j.pedhc.2013.05.006CrossRefGoogle ScholarPubMed
Spijkerboer, AW, De Koning, WB, Duivenvoorden, HJ, et al. Medical predictors for long-term behavioral and emotional outcomes in children and adolescents after invasive treatment of congenital heart disease. J Pediatr Surg 2010; 45: 2146–2153.CrossRefGoogle ScholarPubMed
Liamlahi, R, von Rhein, M, Bührer, S, et al. Motor dysfunction and behavioural problems frequently coexist with congenital heart disease in school-age children. Acta Paediatr 2014; 103: 752–758.Google ScholarPubMed
Vanhalst, J, Rassart, J, Luyckx, K, Goossens, E, Apers, S, Goossens, L, Moons, P; i-DETACH Investigators. Trajectories of loneliness in adolescents with congenital heart disease: associations with depressive symptoms and perceived health. J Adolesc Health. 2013; 53: 342–349.10.1016/j.jadohealth.2013.03.027CrossRefGoogle ScholarPubMed
Luyckx, K, Goossens, E, Rassart, J, Apers, S, Vanhalst, J, Moons, P. Parental support, internalizing symptoms, perceived health status, and quality of life in adolescents with congenital heart disease: influences and reciprocal effects. J Behav Med 2014; 37: 145–155.CrossRefGoogle ScholarPubMed
Clauss, SB, Anderson, JB, Lannon, C, et al. Quality improvement through collaboration: the national pediatric quality improvement collaborative initiative. Curr Opin Pediatr 2015; 27: 555–562.CrossRefGoogle ScholarPubMed
Gaies, M, Anderson, J, Kipps, A, et al. Cardiac Networks United Executive Committee and Advisory Board. Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network. Cardiol Young 2019; 29: 111–118.CrossRefGoogle ScholarPubMed
Bates, KE, Mahle, WT, Bush, L, et al. Variation in implementation and outcomes of early extubation practices after infant cardiac surgery. Ann Thorac Surg 2019; 107: 1434–1440.CrossRefGoogle ScholarPubMed
Kipps, AK, Cassidy, SC, Strohacker, CM, et al. Collective quality improvement in the paediatric cardiology acute care unit: establishment of the Pediatric Acute Care Cardiology Collaborative (PAC3). Cardiol Young 2018; 28: 1019–1023.CrossRefGoogle Scholar
Pasquali, SK, Jacobs, JP, Farber, GK, et al. Report of the national heart, lung, and blood institute working group: an integrated network for congenital heart disease research. Circulation 2016; 133: 1410–1418.CrossRefGoogle Scholar
Gaies, M, Cooper, DS, Tabbutt, S, et al. Collaborative quality improvement in the cardiac intensive care unit: development of the Paediatric Cardiac Critical Care Consortium (PC4). Cardiol Young 2015; 25: 951–957.10.1017/S1047951114001450CrossRefGoogle Scholar
Gaies, M, Pasquali, SK, Banerjee, M, et al, Improvement in pediatric cardiac surgical outcomes through interhospital collaboration. J Am Coll Cardiol 2019; 74: 2786–2795.CrossRefGoogle ScholarPubMed
Wernovsky, G. (2006). Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 16 (S1): 92–104. doi: 10.1017/S1047951105002398 CrossRefGoogle Scholar