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Neurodevelopmental evaluation for school-age children with congenital heart disease: recommendations from the cardiac neurodevelopmental outcome collaborative

Part of: Hypoplastic Left Heart Syndrome (HLHS) Surgery

Published online by Cambridge University Press:  04 November 2020

Dawn Ilardi Open the ORCID record for Dawn Ilardi [Opens in a new window] ,
Jacqueline H. Sanz ,
Adam R. Cassidy ,
Renee Sananes ,
Caitlin K. Rollins ,
Catherine Ullman Shade ,
Gretchen Carroll  and
David C. Bellinger
Dawn Ilardi*
Affiliation:
Children’s Healthcare of Atlanta, Department of Neuropsychology and Emory University, Department of Rehabilitation Medicine, Atlanta, Georgia, USA
Jacqueline H. Sanz
Affiliation:
Children’s National Health System, Division of Neuropsychology and George Washington University School of Medicine, Departments of Psychiatry and Behavioural Sciences and Paediatrics, Washington, DC, USA
Adam R. Cassidy
Affiliation:
Department of Psychiatry, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Renee Sananes
Affiliation:
Labatt Family Heart Centre, Hospital for Sick Children and University of Toronto, Department of Paediatrics, Toronto, Canada
Caitlin K. Rollins
Affiliation:
Department of Neurology, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Catherine Ullman Shade
Affiliation:
Department of Cardiology, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Gretchen Carroll
Affiliation:
Cincinnati Children’s Hospital Medical Center, Heart Institute, Cincinnati, OH, USA
David C. Bellinger
Affiliation:
Department of Psychiatry, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA Department of Neurology, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
*
Author for correspondence: D. Ilardi, PhD, Children’s Healthcare of Atlanta, Department of Neuropsychology, 1400 Tullie Rd, Atlanta, GA 30329, USA. Tel: +(404) 785–5894; Fax: +(404) 785–0978. E-mail: [email protected]
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Abstract

In 2012, the American Heart Association and the American Academy of Paediatrics released a scientific statement with guidelines for the evaluation and management of the neurodevelopmental needs of children with CHD. Decades of outcome research now highlight a range of cognitive, learning, motor, and psychosocial vulnerabilities affecting individuals with CHD across the lifespan. The number of institutions with Cardiac Neurodevelopmental Follow-Up Programmes and services for CHD is growing worldwide. This manuscript provides an expanded set of neurodevelopmental evaluation strategies and considerations for professionals working with school-age children with CHD. Recommendations begin with the referral process and access to the evaluation, the importance of considering medical risk factors (e.g., genetic disorders, neuroimaging), and the initial clinical interview with the family. The neurodevelopmental evaluation should take into account both family and patient factors, including the child/family’s primary language, country of origin, and other cultural factors, as well as critical stages in development that place the child at higher risk. Domains of assessment are reviewed with emphasis on target areas in need of evaluation based on current outcome research with CHD. Finally, current recommendations are made for assessment batteries using a brief core battery and an extended comprehensive clinical battery. Consistent use of a recommended assessment battery will increase opportunities for research collaborations, and ultimately help improve the quality of care for families and children with CHD.

Keywords

Congenital heart diseaseneurodevelopmentalneuropsychologicaldevelopmentalevaluationassesment
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 11 , November 2020 , pp. 1623 - 1636
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Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

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
Khairy, P, Ionescu-Ittu, R, Mackie, AS, Abrahamowicz, M, Pilote, L, Marelli, AJ. Changing mortality in congenital heart disease. J Am College Cardiol 2010; 56: 1149–1157.CrossRefGoogle ScholarPubMed
Marelli, AJ, Ionescu-Ittu, R, Mackie, AS, Guo, L, Dendukuri, N, Kaouache, M. Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation 2014; 130: 749–756.CrossRefGoogle ScholarPubMed
Marelli, A, Miller, SP, Marino, BS, Jefferson, AL, Newburger, JW. Brain in congenital heart disease across the lifespan. Circulation 2016; 133: 1951.CrossRefGoogle ScholarPubMed
Cassidy, AR, Ilardi, D, Bowen, SR, et al. Congenital heart disease: a primer for the pediatric neuropsychologist. Child Neuropsychol 2018: 1–44.Google Scholar
Hardy, KK, Olson, K, Cox, SM, Kennedy, T, Walsh, KS. Systematic review: a prevention-based model of neuropsychological assessment for children with medical illness. J Pediatr Psychol 2017; 42: 815–822.CrossRefGoogle ScholarPubMed
Schmithorst, VJ, Panigrahy, A, Gaynor, JW, et al. Organizational topology of brain and its relationship to ADHD in adolescents with d-transposition of the great arteries. Brain Behav 2016; 6: e00504.CrossRefGoogle ScholarPubMed
von Rhein, M, Buchmann, A, Hagmann, C, et al. Brain volumes predict neurodevelopment in adolescents after surgery for congenital heart disease. Brain 2014; 137(Pt 1): 268–276.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
Resch, JA, Mireles, G, Benz, MR, Grenwelge, C, Peterson, R, Zhang, D. Giving parents a voice: a qualitative study of the challenges experienced by parents of children with disabilities. Rehabil Psychol 2010; 55: 139–150.CrossRefGoogle ScholarPubMed
Castillo, JM, Curtis, MJ, Tan, SY. Personnel needs in school psychology: a 10-year follow-up study on predicted personnel shortages. Psychol Schools 2014; 51: 832–849.CrossRefGoogle Scholar
Silver, CH, Tröster, AI, Reynolds, CR, et al. The importance of neuropsychological assessment for the evaluation of childhood learning disorders NAN Policy and Planning Committee. Arch Clin Neuropsychol 2006; 21: 741–744.CrossRefGoogle ScholarPubMed
Volpe, JJ. Encephalopathy of congenital heart disease- destructive and developmental effects intertwined. J Pediatr 2014; 164: 962–965.CrossRefGoogle ScholarPubMed
Zaidi, S, Choi, M, Wakimoto, H, et al. De novo mutations in histone-modifying genes in congenital heart disease. Nature. 2013; 498: 220–223.CrossRefGoogle ScholarPubMed
Homsy, J, Zaidi, S, Shen, Y, et al. De novo mutations in congenital heart disease with neurodevelopmental and other congenital anomalies. Science 2015; 350: 1262–1266.CrossRefGoogle ScholarPubMed
Gaynor, JW, Stopp, C, Wypij, D, et al. Neurodevelopmental outcomes after cardiac surgery in infancy. Pediatrics 2015; 135: 816–825.CrossRefGoogle ScholarPubMed
The International Cardiac Collaborative on Neurodevelopment (ICCON) Investigators. Impact of operative and postoperative factors on neurodevelopmental outcomes after cardiac operations. Ann Thoracic Surg 2016; 102: 843–849.CrossRefGoogle Scholar
Bellinger, DC, Watson, CG, Rivkin, MJ, et al. Neuropsychological status and structural brain imaging in adolescents with single ventricle who underwent the Fontan procedure. J Am Heart Assoc 2015; 4(12): e002302. doi: 10.1161/JAHA.115.002302.CrossRefGoogle ScholarPubMed
Limperopoulos, C, Tworetzky, W, McElhinney, DB, et al. Brain volume and metabolism in fetuses with congenital heart disease: evaluation with quantitative magnetic resonance imaging and spectroscopy. Circulation 2010; 121: 26–33.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
Sun, L, Macgowan, CK, Sled, JG, et al. Reduced fetal cerebral oxygen consumption is associated with smaller brain size in fetuses with congenital heart disease. Circulation 2015; 131: 1313–1323.CrossRefGoogle ScholarPubMed
von Rhein, M, Buchmann, A, Hagmann, C, et al. Severe congenital heart defects are associated with global reduction of neonatal brain volumes. J Pediatr 2015; 167: 1263.e1251.CrossRefGoogle Scholar
Kelly, CJ, Makropoulos, A, Cordero-Grande, L, et al. Impaired development of the cerebral cortex in infants with congenital heart disease is correlated to reduced cerebral oxygen delivery. Sci Rep 2017; 7: 15088.CrossRefGoogle ScholarPubMed
Beca, J, Gunn, JK, 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
Dehaes, M, Cheng, HH, Buckley, EM, et al. Perioperative cerebral hemodynamics and oxygen metabolism in neonates with single-ventricle physiology. Biomed Opt Express 2015; 6: 4749–4767.CrossRefGoogle ScholarPubMed
De Asis-Cruz, J, Donofrio, MT, Vezina, G, Limperopoulos, C. Aberrant brain functional connectivity in newborns with congenital heart disease before cardiac surgery. NeuroImage Clin. 2018; 17: 31–42.CrossRefGoogle ScholarPubMed
Birca, A, Vakorin, VA, Porayette, P, et al. Interplay of brain structure and function in neonatal congenital heart disease. Ann Clin Transl Neurol 2016; 3: 708–722.CrossRefGoogle ScholarPubMed
Rollins, CK, Watson, CG, Asaro, LA, et al. White matter microstructure and cognition in adolescents with congenital heart disease. J Pediatrics 2014; 165: 936–944 e931–932.CrossRefGoogle ScholarPubMed
Rollins, CK, Asaro, LA, Akhondi-Asl, A, et al. White matter volume predicts language development in congenital heart disease. J Pediatrics 2017; 42–48: e42.CrossRefGoogle Scholar
Liamlahi, R, von Rhein, M, Buhrer, 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
Rivera Mindt, M, Arentoft, A, Kubo Germano, K, et al. Neuropsychological, cognitive, and theoretical considerations for evaluation of bilingual individuals. Neuropsychol Rev 2008; 18: 255–268.CrossRefGoogle ScholarPubMed
Pena, ED, Bedore, LM, Kester, ES. Assessment of language impairment in bilingual children using semantic tasks: two languages classify better than one. Int J Lang Commun Disorders 2016; 51: 192–202.CrossRefGoogle ScholarPubMed
Hammer, CS, Komaroff, E, Rodriguez, BL, Lopez, LM, Scarpino, SE, Goldstein, B. Predicting Spanish-English bilingual children’s language abilities. J Speech Lang Hearing Res 2012; 55: 1251–1264.CrossRefGoogle ScholarPubMed
Gollan, TH, Montoya, RI, Cera, C, Sandoval, TC. More use almost always a means a smaller frequency effect: aging, bilingualism, and the weaker links hypothesis. J Memory Lang 2008; 58: 787–814.CrossRefGoogle Scholar
Gasquoine, PG, Croyle, KL, Cavazos-Gonzalez, C, Sandoval, O. Language of administration and neuropsychological test performance in neurologically intact Hispanic American bilingual adults. Arch Clin Neuropsychol 2007; 22: 991–1001.CrossRefGoogle ScholarPubMed
Bellinger, DC, Newburger, JW. Neuropsychological, psychosocial, and quality-of-life outcomes in children and adolescents with congenital heart disease. Progr Pediatric Cardiol. 2010; 29: 87–92.CrossRefGoogle Scholar
Heilbronner, RL, Sweet, JJ, Attix, DK, Krull, KR, Henry, GK, Hart, RP. Official position of the American Academy of Clinical Neuropsychology on serial neuropsychological assessments: the utility and challenges of repeat test administrations in clinical and forensic contexts. Clin Neuropsycholog. 2010; 24; 1267–1278.CrossRefGoogle ScholarPubMed
Insel, TR The NIMH Research Domain Criteria (RDoC) Project: precision medicine for psychiatry. Am J Psychiatry 2014; 171: 395–397.CrossRefGoogle ScholarPubMed
Casey, BJ, Oliveri, ME, Insel, T. A neurodevelopmental perspective on the research domain criteria (RDoC) framework. Biol Psychiatry 2014; 76: 350–353.CrossRefGoogle ScholarPubMed
Anderson, P. Assessment and development of executive function (EF) during childhood. Child Neuropsychol 2002; 8: 71–82.10.1076/chin.8.2.71.8724CrossRefGoogle ScholarPubMed
Cassidy, AR, White, MT, DeMaso, DR, Newburger, JW, Bellinger, DC. Processing speed, executive function, and academic achievement in children with dextro-transposition of the great arteries: testing a longitudinal developmental cascade model. Neuropsychology 2016; 30: 874–885.CrossRefGoogle ScholarPubMed
Cassidy, AR, White, MT, DeMaso, DR, Newburger, JW, Bellinger, DC. Executive function in children and adolescents with critical cyanotic congenital heart disease. J Int Neuropsycholog Soc 2015; 21: 34–49.CrossRefGoogle ScholarPubMed
Brosig, C, Butcher, J, Ilardi, DL, et al. Supporting development in children with congenital heart disease. Cardiology Patient Page. Circulation. 2014;130 e175–176.CrossRefGoogle ScholarPubMed
Latal, B Neurodevelopmental outcomes of the child with congenital heart disease. Clin Perinatol. 2016; 43: 173–185.CrossRefGoogle ScholarPubMed
Mahle, WT, Clancy, RR, Moss, EM, Gerdes, M, Jobes, DR, Wernovsky, G. Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics 2000; 105: 1082–1089.CrossRefGoogle ScholarPubMed
Bellinger, DC, Wypij, D, duPlessis, AJ, et al. Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: the Boston Circulatory Arrest Trial. J Thoracic Cardiovascular Surg. 2003; 126: 1385–1396.CrossRefGoogle ScholarPubMed
Karsdorp, PA, Everaerd, W, Kindt, M, Mulder, BJ. Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis. J Pediatric Psychol 2007; 32: 527–541.CrossRefGoogle ScholarPubMed
Bellinger, DC, Wypij, D, Kuban, KC, et al. Developmental and neurological status of children at 4 years of age after heart surgery with hypothermic circulatory arrest or low-flow cardiopulmonary bypass. Circulation 1999; 100: 526–532.CrossRefGoogle ScholarPubMed
Brosig, C, Mussatto, K, Hoffman, G, et al. Neurodevelopmental outcomes for children with hypoplastic left heart syndrome at the age of 5 years. Pediatric Cardiol 2013; 34: 1597–1604.CrossRefGoogle ScholarPubMed
Bellinger, DC. Are children with congenital cardiac malformations at increased risk of deficits in social cognition? Cardiol Young. 2008; 18: 3–9.CrossRefGoogle ScholarPubMed
Calderon, J, Bonnet, D, Courtin, C, Concordet, S, Plumet, MH, Angeard, N. Executive function and theory of mind in school-aged children after neonatal corrective cardiac surgery for transposition of the great arteries. Dev Med Child Neurol. 2010; 52: 1139–1144.CrossRefGoogle ScholarPubMed
Mills, R, McCusker, CG, Tennyson, C, Hanna, D Neuropsychological outcomes in CHD beyond childhood: a meta-analysis. Cardiol Young 2018; 28: 421–431.CrossRefGoogle ScholarPubMed
Bean Jaworski, JL, White, MT, DeMaso, DR, Newburger, JW, Bellinger, DC, Cassidy, AR Visuospatial processing in adolescents with critical congenital heart disease: Organization, integration, and implications for academic achievement. Child Neuropsychol 2017: 1–18.CrossRefGoogle Scholar
Bellinger, DC, Bernstein, JH, Kirkwood, MW, Rappaport, LA, Newburger, J. Visual-spatial skills in children after open-heart surgery. J Dev Behav Pediatrics 2003; 24: 169–179.CrossRefGoogle ScholarPubMed
Pike, NA, Woo, MA, Poulsen, MK, et al. Predictors of memory deficits in adolescents and young adults with congenital heart disease compared to healthy controls. Front Pediatrics 2016; 4: 117.CrossRefGoogle Scholar
Sarrechia, I, Miatton, M, De Wolf, D, et al. Neurocognitive development and behaviour in school-aged children after surgery for univentricular or biventricular congenital heart disease. Eur J Cardio-thoracic Surg 2016; 49: 167–174.CrossRefGoogle ScholarPubMed
Wotherspoon, JM, Eagleson, KJ, Gilmore, L, et al. Neurodevelopmental and health-related quality-of-life outcomes in adolescence after surgery for congenital heart disease in infancy. Dev Med Child Neurol. 2019.CrossRefGoogle Scholar
Cassidy, AR, Newburger, JW, Bellinger, DC Learning and Memory in Adolescents With Critical Biventricular Congenital Heart Disease. J Int Neuropsycholog Soc 2017; 23: 627–639.CrossRefGoogle ScholarPubMed
Diamond, A. Executive functions. Annu Rev Psychol 2013; 64: 135–168.CrossRefGoogle ScholarPubMed
Sanz, JH, Berl, MM, Armour, AC, Wang, J, Cheng, YI, Donofrio, MT. Prevalence and pattern of executive dysfunction in school age children with congenital heart disease. Cong Heart Dis 2017; 12: 202–209.CrossRefGoogle ScholarPubMed
Holland, JE, Cassidy, AR, Stopp, C, et al. Psychiatric Disorders and Function in Adolescents with Tetralogy of Fallot. J Pediatr. 2017; 187: 165–173.CrossRefGoogle ScholarPubMed
DeMaso, DR, Labella, M, Taylor, GA, et al. Psychiatric disorders and function in adolescents with d-transposition of the great arteries. J Pediatr. 2014; 165: 760–766.CrossRefGoogle ScholarPubMed
Kail, R, Salthouse, TA. Processing speed as a mental capacity. Acta Psycholog. 1994; 86: 199–225.CrossRefGoogle ScholarPubMed
Ferrer, E, Whitaker, KJ, Steele, JS, Green, CT, Wendelken, C, Bunge, SA. White matter maturation supports the development of reasoning ability through its influence on processing speed. Dev Sci 2013; 16: 941–951.Google ScholarPubMed
Astrid, FF, Sandra H. Processing speed, working memory, and fluid intelligence: evidence for a developmental cascade. Psycholog Sci. 1996; 7: 237–241.Google Scholar
Kail, RV. Longitudinal evidence that increases in processing speed and working memory enhance children’s reasoning. Psychol Sci. 2007; 18: 312–313.CrossRefGoogle ScholarPubMed
Rose, SA, Feldman, JF, Jankowski, JJ Modeling a cascade of effects: the role of speed and executive functioning in preterm/full-term differences in academic achievement. Dev Sci 2011; 14: 1161–1175.CrossRefGoogle ScholarPubMed
Limperopoulos, C, Majnemer, A, Shevell, MI, et al. Functional limitations in young children with congenital heart defects after cardiac surgery. Pediatrics. 2001; 108: 1325–1331.CrossRefGoogle ScholarPubMed
Limperopoulos, C, Majnemer, A, Shevell, MI, et al. Predictors of developmental disabilities after open heart surgery in young children with congenital heart defects. J Pediatr 2002; 141: 51–58.CrossRefGoogle ScholarPubMed
Majnemer, A, Limperopoulos, C, Shevell, M, Rosenblatt, B, Rohlicek, C, Tchervenkov, C. Long-term neuromotor outcome at school entry of infants with congenital heart defects requiring open-heart surgery. J Pediatr. 2006; 148: 72–77.CrossRefGoogle ScholarPubMed
Holm, I, Fredriksen, PM, Fosdahl, MA, Olstad, M, Vollestad, N. Impaired motor competence in school-aged children with complex congenital heart disease. Arch Pediatr Adoles Med 2007; 161: 945–950.CrossRefGoogle ScholarPubMed
Bellinger, DC, Wypij, D, Rivkin, MJ, et al. Adolescents with d-transposition of the great arteries corrected with the arterial switch procedure: neuropsychological assessment and structural brain imaging. Circulation 2011; 124: 1361–1369.CrossRefGoogle ScholarPubMed
Shillingford, AJ, Glanzman, MM, Ittenbach, RF, Clancy, RR, Gaynor, JW, Wernovsky G. Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease. Pediatrics 2008; 121: e759–767.CrossRefGoogle Scholar
Bellinger, DC, Rivkin, MJ, DeMaso, D, et al. Adolescents with tetralogy of Fallot: neuropsychological assessment and structural brain imaging. Cardiol Young. 2015; 25: 338–347.CrossRefGoogle ScholarPubMed
Wray, J, Sensky, T. Congenital heart disease and cardiac surgery in childhood: effects on cognitive function and academic ability. Heart. 2001; 85: 687–691.CrossRefGoogle ScholarPubMed
Oster, ME, Watkins, S, Hill, KD, Knight, JH, Meyer, RE. Academic outcomes in children with congenital heart defects: a population-based cohort study. Circ Cardiovasc Qual Outcomes. 2017; 10.CrossRefGoogle Scholar
DeMaso, DR, Calderon, J, Taylor, GA, et al. Psychiatric disorders in adolescents with single ventricle congenital heart disease. Pediatrics 2017.CrossRefGoogle Scholar
Freitas, IR, Castro, M, Sarmento, SL, et al. A cohort study on psychosocial adjustment and psychopathology in adolescents and young adults with congenital heart disease. BMJ Open 2013; 3.CrossRefGoogle Scholar
Brosig, CL, Mussatto, KA, Kuhn, EM, Tweddell, JS Psychosocial outcomes for preschool children and families after surgery for complex congenital heart disease. Pediatr Cardiol. 2007; 28: 255–262.CrossRefGoogle ScholarPubMed
Visconti, KJ, Saudino, KJ, Rappaport, LA, Newburger, JW, Bellinger, DC. Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries. J Dev Behav Pediatr 2002; 23: 314–321.CrossRefGoogle ScholarPubMed
Davis, CC, Brown, RT, Bakeman, R, Campbell, R. Psychological adaptation and adjustment of mothers of children with congenital heart disease: stress, coping, and family functioning. J Pediatr Psychol. 1998; 23: 219–228.CrossRefGoogle ScholarPubMed
Ravindran, VP, Rempel, GR Grandparents and siblings of children with congenital heart disease. J Adv Nurs. 2011; 67: 169–175.CrossRefGoogle ScholarPubMed
McCusker, CG, Armstrong, MP, Mullen, M, Doherty, NN, Casey, FA. A sibling-controlled, prospective study of outcomes at home and school in children with severe congenital heart disease. Cardiol Young. 2013; 23: 507–516.CrossRefGoogle ScholarPubMed
Bellinger, DC, Newburger, JW, Wypij, D, Kuban, KC, duPlesssis, AJ, Rappaport, LA Behaviour at eight years in children with surgically corrected transposition: the Boston Circulatory Arrest Trial. Cardiol Young. 2009; 19: 86–97.CrossRefGoogle ScholarPubMed
Jackson, JL, Gerardo, GM, Monti, JD, Schofield, KA, Vannatta, K. Executive function and internalizing symptoms in adolescents and young adults with congenital heart disease: the role of coping. J Pediatr Psychol. 2018:jsx154-jsx154.Google Scholar
Cassidy, AR Executive function and psychosocial adjustment in healthy children and adolescents: a latent variable modelling investigation. Child Neuropsychol 2016; 22: 292–317.CrossRefGoogle ScholarPubMed
Schaefer, C, von Rhein, M, Knirsch, W, et al. Neurodevelopmental outcome, psychological adjustment, and quality of life in adolescents with congenital heart disease. Dev Med Child Neurol. 2013; 55: 1143–1149.CrossRefGoogle ScholarPubMed
Latal, B, Helfricht, S, Fischer, JE, Bauersfeld, U, Landolt, MA. Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: a systematic review. BMC Pediatr. 2009; 9: 6.CrossRefGoogle ScholarPubMed
Marino, BS, Tomlinson, RS, Wernovsky, G, et al. Validation of the pediatric cardiac quality of life inventory. Pediatrics. 2010;126 498–508.CrossRefGoogle ScholarPubMed
Association, AP Diagnostic and Statistical Manual of Mental Disorders (5th Edition). Washington, DC: American Psychiatric Publishing; 2013.CrossRefGoogle Scholar
Harrison, P, Oakland, T. Adaptive behavior assessment system (ABAS-II). San Antonio, TX: The Psychological Corporation; 2003.Google Scholar
Alton, GY, Rempel, GR, Robertson, CM, Newburn-Cook, CV, Norris, CM. Functional outcomes after neonatal open cardiac surgery: comparison of survivors of the Norwood staged procedure and the arterial switch operation. Cardiol Young. 2010; 20: 668–675.CrossRefGoogle ScholarPubMed
Alton, GY, Taghados, S, Joffe, AR, Robertson, CM, Dinu, I, Western Canadian Pediatric Therapies Follow-Up G. Prediction of preschool functional abilities after early complex cardiac surgery. Cardiol Young. 2015; 25: 655–662.CrossRefGoogle ScholarPubMed
Uzark, K, Zak, V, Shrader, P, et al. Assessment of quality of life in young patients with single ventricle after the fontan operation. J Pediatr. 2016; 166–172: e161.Google Scholar
DeMaso, DR, Campis, LK, Wypij, D, Bertram, S, Lipshitz, M, Freed, M. The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. J Pediatr Psychol. 1991; 16: 137–149.CrossRefGoogle ScholarPubMed
Kern, JH, Hinton, VJ, Nereo, NE, Hayes, CJ, Gersony, WM. Early developmental outcome after the Norwood procedure for hypoplastic left heart syndrome. Pediatrics 1998; 102: 1148–1152.CrossRefGoogle ScholarPubMed
Williams, WG, McCrindle, BW, Ashburn, DA, Jonas, RA, Mavroudis, C, Blackstone, EH Outcomes of 829 neonates with complete transposition of the great arteries 12–17 years after repair. Eur J Cardio-thoracic Surg 2003; 24: 1–9; discussion 9–10.CrossRefGoogle ScholarPubMed
Calderon, J, Bellinger, DC. Executive function deficits in congenital heart disease: why is intervention important? Cardiol Young. 2015; 25: 1238–1246.CrossRefGoogle ScholarPubMed
Tsao, PC, Lee, YS, Jeng, MJ, et al. Additive effect of congenital heart disease and early developmental disorders on attention-deficit/hyperactivity disorder and autism spectrum disorder: a nationwide population-based longitudinal study. Eur Child Adolescent Psychiatry 2017; 26: 1351–1359.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