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Characterisation of neurodevelopmental and psychological outcomes in CHD: a research agenda and recommendations from the cardiac neurodevelopmental outcome collaborative

Published online by Cambridge University Press:  04 June 2021

Jacqueline H. Sanz ,
Julia Anixt ,
Laurel Bear ,
Amy Basken ,
John Beca ,
Bradley S. Marino ,
Kathleen A. Mussatto ,
Wendy N. Nembhard ,
Anjali Sadhwani  and
Renee Sananes Open the ORCID record for Renee Sananes [Opens in a new window]
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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
Julia Anixt
Affiliation:
Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center and Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA
Laurel Bear
Affiliation:
Department of Pediatrics, Medical College of Wisconsin, Herma Heart Institute, Children’s Wisconsin, Milwaukee, Wisconsin, USA
Amy Basken
Affiliation:
Conquering CHD, Madison, Wisconsin, USA
John Beca
Affiliation:
Department of Intensive Care, Starship Children’s Health, Auckland, New Zealand
Bradley S. Marino
Affiliation:
Department of Pediatric Cardiology, Cleveland Clinic Children’s Hospital, Cleveland, Ohio, USA
Kathleen A. Mussatto
Affiliation:
School of Nursing, Milwaukee School of Engineering, Milwaukee, Wisconsin, USA
Wendy N. Nembhard
Affiliation:
Department of Epidemiology and the Arkansas Birth Defects Center for Research and Prevention, Fay W Boozman College of Public Health, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA
Anjali Sadhwani
Affiliation:
Department of Psychiatry, Boston Children’s Hospital & Department of Psychiatry, Harvard Medical School, Boston, Massachusetts, USA
Renee Sananes
Affiliation:
Division of Cardiology, Department of Psychology, The Hospital for Sick Children, Department of Pediatrics, The University of Toronto, Toronto, Canada
Lara S. Shekerdemian
Affiliation:
Department of Pediatrics, Section of Critical Care, Baylor College of Medicine, Houston, TX, USA
Erica Sood
Affiliation:
Nemours Cardiac Center, Alfred I. duPont Hospital for Children, Wilmington, DE & Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania, USA
Karen Uzark
Affiliation:
Department of Pediatrics, Section of Pediatric Cardiology, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, USA
Elizabeth Willen
Affiliation:
Division of Developmental and Behavioral Sciences and the Ward Family Heart Center, Children’s Mercy, Kansas City, University of Missouri-Kansas City School of Medicine, Kansas City, Missouri, USA
Dawn Ilardi
Affiliation:
Department of Neuropsychology, Children’s Healthcare of Atlanta, Emory University, Atlanta, GA, USA
*
Author for correspondence: Jacqueline H. Sanz, Ph.D., ABPP-CN, Department of Neuropsychology, Children’s National Hospital, 111 Michigan Avenue NW, Washington, DC20010, USA. Tel: 202-476-5000. E-mail: jsanz@childrensnational.org
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Abstract

The Neurodevelopmental and Psychological Outcomes Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute with the goals of identifying knowledge gaps regarding the neurodevelopmental and psychological outcomes of individuals with CHD and investigations needed to advance science, policy, clinical care, and patient/family outcomes. Accurate characterisation of neurodevelopmental and psychological outcomes in children with CHD will drive improvements in patient and family outcomes through targeted intervention. Decades of research have produced a generalised perspective about neurodevelopmental and psychological outcomes in this heterogeneous population. Future investigations need to shift towards improving methods, measurement, and analyses of outcomes to better inform early identification, prevention, and intervention. Improved definition of underlying developmental, neuropsychological, and social-emotional constructs is needed, with an emphasis on symptom networks and dimensions. Identification of clinically meaningful outcomes that are most important to key stakeholders, including patients, families, schools and providers, is essential, specifically how and which neurodevelopmental differences across the developmental trajectory impact stakeholders. A better understanding of the discontinuity and patterns of neurodevelopment across the lifespan is critical as well, with some areas being more impactful at some ages than others. Finally, the field needs to account for the impact of race/ethnicity, socio-economic status, cultural and linguistic diversity on our measurement, interpretation of data, and approach to intervention and how to improve generalisability to the larger worldwide population of patients and families living with CHD.

Keywords

Neurodevelopmental outcomespsychological outcomesCHDparents and stakeholders
Type
Review
Information
Cardiology in the Young , Volume 31 , Issue 6 , June 2021 , pp. 876 - 887
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Copyright
© The Author(s), 2021. Published by Cambridge University Press

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References

Sood, E, Jacobs, JP, Marino, BS The Cardiac Neurodevelopmental Outcome Collaborative: a new community improving outcomes for individuals with congenital heart disease. Cardiol Young 2020; 30: 1595–1596.CrossRefGoogle ScholarPubMed
Marino, BS, Sood, E, Cassidy, AR, et al. The origins and development of the Cardiac Neurodevelopmental Outcome Collaborative: creating innovative clinical, quality improvement, and research opportunities. Cardiol Young 2020; 30: 1597–1602.CrossRefGoogle ScholarPubMed
Miller, TA, Sadhwani, A, Sanz, J, et al. Variations in practice in cardiac neurodevelopmental follow-up programs. Cardiol Young 2020; 30: 1603–1608.CrossRefGoogle ScholarPubMed
Ware, J, Butcher, JL, Latal, B, et al. Neurodevelopmental evaluation strategies for children with congenital heart disease aged birth through 5 years: recommendations from the cardiac neurodevelopmental outcome collaborative. Cardiol Young 2020; 30: 1609–1622.CrossRefGoogle ScholarPubMed
Ilardi, D, Sanz, JH, Cassidy, AR, et al. Neurodevelopmental evaluation for school-age children with congenital heart disease: recommendations from the cardiac neurodevelopmental outcome collaborative. Cardiol Young 2020; 30: 1623–1636.CrossRefGoogle ScholarPubMed
Sood, E, Jacobs, JP, Marino, BS Optimizing neurodevelopmental and psychosocial outcomes for survivors with congenital heart disease: a research agenda for the next decade. Cardiol Young 2021; 31: 876–887. This Issue.Google Scholar
Cassidy, AR, Butler, SC, Briend, J, et al. Neurodevelopmental and psychosocial interventions for individuals with congenital heart disease: A research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative. Cardiol Young 2021; 31:876–887. This Issue.Google Scholar
Sood, E, Lisanti, AJ, Woolf-King, SE, et al. Parent mental health and family functioning following diagnosis of congenital heart disease: A research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative. 2021; 31: 876–887. This Issue.CrossRefGoogle Scholar
Cassidy, AR, Ilardi, D, Bowen, SR, et al. Congenital heart disease: A primer for the pediatric neuropsychologist. Child Neuropsychol J Norm Abnorm Dev Child Adolesc 2017; 24: 1–44.Google ScholarPubMed
Bellinger, DC, Newburger, J Neuropsychological, psychosocial, and quality-of-life outcomes in children and adolescents with congenital heart disease. Prog Pediatr Cardiol 2010; 29: 87–92.CrossRefGoogle Scholar
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 Thorac Cardiovasc Surg 2003; 126: 1385–1396.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. Pediatr Cardiol 2013; 34: 1597–1604.CrossRefGoogle Scholar
Cassidy, AR, White, MT, DeMaso, DR, et al. Executive Function in Children and Adolescents with Critical Cyonotic Congenital Heart Disease. J Int Neuropsychol Soc 2015; 21: 34–49.CrossRefGoogle ScholarPubMed
Griffin, KJ, Elkin, TD, Smith, CJ Academic outcomes in children with congenital heart disease. Clin Pediatr (Phila) 2003; 42: 401–409.CrossRefGoogle ScholarPubMed
Ilardi, D, Ono, KE, McCartney, R, et al. Neurocognitive functioning in adults with congenital heart disease. Congenit Heart Dis 2017; 12: 166–173.CrossRefGoogle ScholarPubMed
King, TZ, Smith, KM, Burns, TG, et al. fMRI investigation of working memory in adolescents with surgically treated congenital heart disease. Appl Neuropsychol Child 2017; 6: 7–21.CrossRefGoogle ScholarPubMed
McGrath, E, Wypij, D, Rappaport, LA, et al. Prediction of IQ and achievement at age 8 years from neurodevelopmental status at age 1 year in children with D-transposition of the great arteries. Pediatr 2004; 114: e572–6.CrossRefGoogle Scholar
Miatton, M, De Wolf, D, François, K, et al. Neuropsychological performance in school-aged children with surgically corrected congenital heart disease. J Pediatr 2007; 151: 73–78.CrossRefGoogle ScholarPubMed
Mills, R, McCusker, CG, Tennyson, C, et al. Neuropsychological outcomes in CHD beyond childhood: a meta-analysis. Cardiol Young 2018; 28 : 421–431.CrossRefGoogle ScholarPubMed
Sanz, JH, Berl, MM, Armour, AC, et al. Prevalence and pattern of executive dysfunction in school age children with congenital heart disease. Congenit Heart 2017; 12: 202–209.CrossRefGoogle ScholarPubMed
Wernovsky, G, Stiles, KM, Gauvreau, K, et al. Cognitive development after the Fontan operation. Circ. 2000; 102: 883–889.CrossRefGoogle ScholarPubMed
Cassidy, AR, Newburger, JW, Bellinger, DC Learning and Memory in Adolescents With Critical Biventricular Congenital Heart Disease. J Int Neuropsychol Soc 2017; 23: 627–639.CrossRefGoogle ScholarPubMed
Muñoz-López, M, Hoskote, A, Chadwick, MJ, et al. Hippocampal damage and memory impairment in congenital cyanotic heart disease. Hippocampus 2017; 27: 417–424.CrossRefGoogle ScholarPubMed
Mulkey, SB, Bai, S, Luo, C, et al. School-Age Test Proficiency and Special Education After Congenital Heart Disease Surgery in Infancy. J Pediatr 2016; 178: 47–54.CrossRefGoogle ScholarPubMed
Oster, ME, Watkins, S, Hill, KD, et al. Academic Outcomes in Children With Congenital Heart Defects: A Population-Based Cohort Study. Circ Cardiovasc Qual Outcomes 2017; 10: e00307.CrossRefGoogle ScholarPubMed
Carey, AS, Liang, L, Edwards, J, et al. Effect of copy number variants on outcomes for infants with single ventricle heart defects. Circ Cardiovasc Genet 2013; 6: 444–451.CrossRefGoogle ScholarPubMed
Fuller, S, Nord, AS, Gerdes, M, et al. Predictors of impaired neurodevelopmental outcomes at one year of age after infant cardiac surgery. Eur J Cardio-Thorac Surg 2009; 36: 40–47.CrossRefGoogle ScholarPubMed
Gaynor, JW, Wernovsky, G, Jarvik, GP, 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.CrossRefGoogle ScholarPubMed
Latal, B Neurodevelopmental Outcomes of the Child with Congenital Heart Disease. Clin Perinatol 2016; 43: 173–185.CrossRefGoogle ScholarPubMed
Kovacs, AH, Saidi, AS, Kuhl, EA, et al. Depression and anxiety in adult congenital heart disease: predictors and prevalence. Int J Cardiol 2009; 137 158–164.CrossRefGoogle ScholarPubMed
DeMaso, DR, Calderon, J, Taylor, GA, et al. Psychiatric Disorders in Adolescents With Single Ventricle Congenital Heart Disease. Pediatrics 2017; 139: 320162241.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
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
Jaworski, JLB, Flynn, T, Burnham, N, et al. Rates of autism and potential risk factors in children with congenital heart defects. Congenit Heart Dis 2017; 12: 421–429.CrossRefGoogle Scholar
Cramer, AOJ, Waldorp, LJ, van der Maas, HLJ, et al. Comorbidity: a network perspective. Behav Brain Sci 2010; 33: 137–193.CrossRefGoogle ScholarPubMed
Borsboom, D, Cramer, AOJ Network Analysis: an Integrative Approach to the Structure of Psychopathology. Annu Rev Clin Psychol 2013; 9: 91–121.CrossRefGoogle ScholarPubMed
Cuthbert, BN The RDoC framework: facilitating transition from ICD/DSM to dimensional approaches that integrate neuroscience and psychopathology: Forum - The Research Domain Criteria Project. World Psychiatry 2014; 13: 28–35.CrossRefGoogle Scholar
Insel, T, Cuthbert, B, Garvey, M, et al. Research Domain Criteria (RDoC): Toward a New Classification Framework for Research on Mental Disorders. Am J Psychiatry 2010; 167: 748–751.CrossRefGoogle Scholar
Casey, BJ, Oliveri, ME, Insel, TA Neurodevelopmental Perspective on the Research Domain Criteria (RDoC) Framework. Biol Psychiatry 2014; 76: 350–353.CrossRefGoogle ScholarPubMed
Karsdorp, PA, Everaerd, W, Kindt, M, et al. Psychological and Cognitive Functioning in Children and Adolescents with Congenital Heart Disease: A Meta-Analysis. J Pediatr Psychol 2007; 32: 527–541.CrossRefGoogle ScholarPubMed
Latal, B, Helfricht, S, Fischer, JE, et al. 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, Lipkin, PH, Newburger, WJ, 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
Wilson, WM, Smith-Parrish, M, Marino, BS, et al. Neurodevelopmental and psychosocial outcomes across the congenital heart disease lifespan. Prog Pediatr Cardiol 2015; 39: 113–118.CrossRefGoogle Scholar
Bellinger, DC, Jonas, RA, Rappaport, LA, et al. Developmental and neurologic status of children after heart surgery with hypothermic circulatory arrest or low-flow cardiopulmonary bypass. N Engl J Med 1995; 332: 549–555.CrossRefGoogle ScholarPubMed
Newburger, JW, Sleeper, LA, Bellinger, DC, et al. Early Developmental Outcome in Children With Hypoplastic Left Heart Syndrome and Related Anomalies. Circulation 2012; 125: 2081–2091.CrossRefGoogle ScholarPubMed
Brosig, CL, Bear, L, Allen, S, et al. Neurodevelopmental outcomes at 2 and 4 years in children with congenital heart disease. Congenit Heart Dis 2018; 13: 700–705.CrossRefGoogle ScholarPubMed
Goldberg, C, Lu, M, Sleeper, LA, et al. Factors Associated with Neurodevelopment for Children with Single Ventricle Lesions. J Pediatr 2014; 165: 490–496.CrossRefGoogle ScholarPubMed
Bellinger, DC, Wypij, DW, 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
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
Kovacs, AH, Sears, SF, Saidi, AS Biopsychosocial experiences of adults with congenital heart disease: review of the literature. Am. Heart J 2005; 150: 193–201.CrossRefGoogle ScholarPubMed
Klouda, L, Franklin, WJ, Saraf, A, et al. Neurocognitive and executive functioning in adult survivors of congenital heart disease. Congenit Heart Dis 2017; 12: 91–98.CrossRefGoogle ScholarPubMed
Das, A, Tyson, J, Pedroza, C, et al. Methodological issues in the design and analyses of neonatal research studies: experience of the NICHD Neonatal Research Network. Semin Perinatol 2016; 40: 374–384.CrossRefGoogle ScholarPubMed
Heinonen, K, Eriksson, JG, Lahti, J, et al. Late preterm birth and neurocognitive performance in late adulthood: a birth cohort study. Pediatrics 2015; 135: e818–825.CrossRefGoogle ScholarPubMed
Vohr, B Expanding the Definition of Long-term Follow-up to Late Adulthood. Pediatrics 2015; 135: e1038–e1039.CrossRefGoogle ScholarPubMed
Cox, MJ, Mills-Koonce, R, Propper, C, et al. Systems theory and cascades in developmental psychopathology. Dev Psychopathol 2010; 22: 497–506.CrossRefGoogle ScholarPubMed
Masten, AS, Cicchetti, D Developmental cascades. Dev Psychopathol 2010; 22: 491–495.CrossRefGoogle ScholarPubMed
Bornstein, MH, Hahn, CS, Wolke, D Systems and Cascades in Cognitive Development and Academic Achievement. Child Dev 2013; 84: 154–162.CrossRefGoogle ScholarPubMed
Wade, M, Browne, DT, Plamondon, A, et al. Cumulative risk disparities in children’s neurocognitive functioning: a developmental cascade model. Dev Sci 2016; 19: 179–194.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
Rose, SA, Feldman, JF, Jankowski, JJ, et al. Information Processing from Infancy to 11 Years: continuities and Prediction of IQ. Intelligence 2012; 40: 445–457.CrossRefGoogle ScholarPubMed
Cassidy, AR, White, MT, DeMaso, DR, et al. 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
Gurvitz, M, Valente, AM, Broberg, C, et al. Prevalence and Predictors of Gaps in Care Among Adult Congenital Heart Disease Patients: HEART-ACHD (The Health, Education, and Access Research Trial). J Am Coll Cardiol 2013; 61: 2180–2184.CrossRefGoogle Scholar
Masten, AS, Roisman, GI, Long, JD, et al. Developmental cascades: linking academic achievement and externalizing and internalizing symptoms over 20 years. Dev Psychol 2005; 41: 733–746.CrossRefGoogle ScholarPubMed
O’Shea, T, Allred, EN, Dommann, O, et al. The ELGAN study of the brain and related disorders in extremely low gestational age newborns. Early Hum Dev 2009; 85: 1161–1175.Google ScholarPubMed
Costeloe, K, Hennessy, E, Gibson, AT, et al. The EPICure study: outcomes to discharge from hospital for infants born at the threshold of viability. Pediatrics 2000; 106: 659–671.CrossRefGoogle Scholar
Larroque, B, Breart, G, Kaminski, M, et al. Survival of very preterm infants: Epipage, a population based cohort study. Arch Dis Child Fetal Neonatal Ed 2004; 89: F139–144.CrossRefGoogle ScholarPubMed
Sanz, JH, Wang, J, Berl, MM, et al. Executive Function and Psychosocial Quality of Life in School Age Children with Congenital Heart Disease. J Pediatr 2018; 202: 63–69.CrossRefGoogle ScholarPubMed
Gerstle, M, Beebe, DW, Drotar, D, et al. Executive Functioning and School Performance among Pediatric Survivors of Complex Congenital Heart Disease. J Pediatr 2016; 173: 154–159.CrossRefGoogle ScholarPubMed
Hollin, IL, Donaldson, SH, Roman, C, et al. Beyond the expected: identifying broad research priorities of researchers and the cystic fibrosis community. J Cyst Fibros 2019; 18: 375–377.CrossRefGoogle ScholarPubMed
Sheridan, S, Schrandt, S, Forsythe, L, et al. The PCORI Engagement Rubric: promising Practices for Partnering in Research. Ann Fam Med 2017; 15: 165–170.CrossRefGoogle ScholarPubMed
PCORI Engagement Rubric for Applicants. http://www.pcori.org/sites/default/files/Engagement-Rubric.pdf (2014).Google Scholar
Olson, A, Seidler, A, Goodman, D, et al. School Professionals’ Perceptions About the Impact of Chronic Illness in the Classroom. Arch Pediatr Adolesc Med 2004; 158: 53–58.CrossRefGoogle ScholarPubMed
Alderfer, MA, Sood, E Using qualitative research methods to improve clinical care in pediatric psychology. Clin Pract Pediatr Psychol 2016; 4: 358–361.CrossRefGoogle Scholar
Israel, B, Eng, E, Schulz, A, et al. Introduction to Methods for Community Based Population Research for Health. In: Israel, B, Eng, E, Schulz, A, Parker, E (eds). Methods for Community-Based Participatory Research for Health. Jossey Bass, San Francisco, 2013: 3–37.Google Scholar
Chumra Kramer, H, Noda, A, O’Hara, R Categorical versus dimensional approaches to diagnosis: methodological challenges. J Psychiatr Res 2004; 38: 17–25.CrossRefGoogle Scholar
Toro, KT, Miklosi, M, Horanyi, E, et al. Reading Disability Spectrum: Early and Late Recognition, Subthreshold, and Full Comorbidity. J Learn Disabil 2018; 51: 158–167.CrossRefGoogle ScholarPubMed
Norén Selinus, E, Molero, Y, Lichtenstein, P, et al. Subthreshold and threshold attention deficit hyperactivity disorder symptoms in childhood: psychosocial outcomes in adolescence in boys and girls. Acta Psychiatr Scand 2016; 134: 533–545.CrossRefGoogle ScholarPubMed
Helmchen, H, Linden, M Subthreshold disorders in psychiatry: Clinical reality, methodological artifact, and the double-threshold problem. Compr Psychiatry 2000; 41: 1–7.CrossRefGoogle ScholarPubMed
Borsboom, D A network theory of mental disorders. World Psychiatry 2017; 16: 5–13.CrossRefGoogle ScholarPubMed
Carlew, AR, Zartman, AL DSM Nosology Changes in Neuropsychological Diagnoses through the Years: A Look at ADHD and Mild Neurocognitive Disorder. Behav Sci 2017; 7: 1.CrossRefGoogle Scholar
Kim, YS, State, MW Recent challenges to the psychiatric diagnostic nosology: a focus on the genetics and genomics of neurodevelopmental disorders. Int J Epidemiol 2014; 43: 465–475.CrossRefGoogle ScholarPubMed
Pugliese, CE, Anthony, LG, Strang, JF, et al. Longitudinal Examination of Adaptive Behavior in Autism Spectrum Disorders: influence of Executive Function. J Autism Dev Disord 2016; 46: 467–477.CrossRefGoogle ScholarPubMed
Harrison, L, McLeod, S Risk and protective factors associated with speech and language impairment in a nationally representative sample of 4- to 5-year-old children. J Speech Lang Hear Res JSLHR 2010; 53: 508–529.CrossRefGoogle Scholar
Peterson, RL, Boada, R, McGrath, LM, et al. Cognitive Prediction of Reading, Math, and Attention: shared and Unique Influences. J Learn Disabil 2017; 50: 408–421.CrossRefGoogle ScholarPubMed
Daley, D, Birchwood, J ADHD and academic performance: why does ADHD impact on academic performance and what can be done to support ADHD children in the classroom? Child Care Health Dev 2010; 36: 455–464.CrossRefGoogle ScholarPubMed
Sabol Tierri, J, Pianta, RC Patterns of School Readiness Forecast Achievement and Socioemotional Development at the End of Elementary School. Child Dev 2011; 83: 282–299.CrossRefGoogle Scholar
Hong, S, Dwyer, D, Kim, J, et al. Subthreshold attention-deficit/hyperactivity disorder is associated with functional impairments across domains: a comprehensive analysis in a large-scale community study. Eur Child Adolesc Psychiatry 2014; 23: 627–636.CrossRefGoogle Scholar
Wilms, HU, Kanowski, S, Baltes, MM Limitations in activities of daily living: Towards a better understanding of subthreshold mental disorders in old age. Compr Psychiatry 2000; 41: 19–25.CrossRefGoogle ScholarPubMed
Jackson, JL, Gerardo, GM, Monti, JD, et al. Executive Function and Internalizing Symptoms in Adolescents and Young Adults With Congenital Heart Disease: the Role of Coping. J Pediatr Psychol 2018; 43: 906–915.CrossRefGoogle Scholar
Newman, T, Blackburn, S. Transitions in the Lives of Children and Young People: Resilience Factors. Scottish Executive Education Department, 2002.Google Scholar
Cohen, M, Mansoor, D, Langut, H, et al. Quality of life, depressed mood, and self-esteem in adolescents with heart disease. Psychosom Med 2007; 69: 313–318.CrossRefGoogle ScholarPubMed
Mussatto, KA, Sawin, KJ, Schiffman, R, et al. The importance of self-perceptions to psychosocial adjustment in adolescents with heart disease. J Pediatr Health Care 2014; 28: 251–261.CrossRefGoogle ScholarPubMed
Salzer-Muhar, U, Herle, M, Floquet, P, et al. Self-concept in male and female adolescents with congenital heart disease. Clin Pediatr (Phila.) 2002; 41: 17–24.CrossRefGoogle ScholarPubMed
Visconti, KJ, Saudino, KJ, Rappaport, LA, et al. 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
Nabors, LA, Kichler, JC, Brassell, A, et al. Factors related to caregiver state anxiety and coping with a child’s chronic illness. Fam Syst Health J Collab Fam Healthc 2013; 31: 171–180.CrossRefGoogle ScholarPubMed
Howard Sharp, KM, Willard, VW, Okado, Y, et al. Profiles of Connectedness: Processes of Resilience and Growth in Children With Cancer. J Pediatr Psychol 2015; 40: 904–913.CrossRefGoogle ScholarPubMed
Traub, F, Boynton-Jarrett, R Modifiable Resilience Factors to Childhood Adversity for Clinical Pediatric Practice. Pediatrics 2017; 139: e20162569.CrossRefGoogle ScholarPubMed
Sood, E, Karpyn, A, Demianczyk, AC, et al. Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: recommendations for Pediatric Critical Care. Pediatr Crit Care Med 2018; 19: 626–634.CrossRefGoogle ScholarPubMed
Rolland, JS, Walsh, F Facilitating family resilience with childhood illness and disability. Curr Opin Pediatr 2006; 18: 527–538.CrossRefGoogle ScholarPubMed
Flores, G, Committee On Pediatric Research Technical report--racial and ethnic disparities in the health and health care of children. Pediatrics 2010; 125: e979–e1020.CrossRefGoogle ScholarPubMed
Manly, JJ Advantages and disadvantages of separate norms for African Americans. Clin Neuropsychol 2005; 19: 270–275.CrossRefGoogle ScholarPubMed
Norbury, C, Sparks, A Difference or disorder? Cultural issues in understanding neurodevelopmental disorders. Dev Psychol 2013; 49: 45–58.CrossRefGoogle ScholarPubMed
Rosselli, M, Ardila, A The impact of culture and education on non-verbal neuropsychological measurements: a critical review. Brain Cogn 2003; 52: 326–333.CrossRefGoogle ScholarPubMed
Mikesell, L, Bromley, E, Khodyakov, D Ethical Community-Engaged Research: A Literature Review. Am J Public Health 2013; 103: e7–e14.CrossRefGoogle ScholarPubMed
Llorente, A Hispanic Populations: Special Issues in Neuropsychology In Llorente, A (ed) Principles of Neuropsychological Assessment With Hispanics. Springer, New York, 2008: 47–56.CrossRefGoogle Scholar
Byrd, D, Arentoft, A, Scheiner, D, et al. State of multicultural neuropsychological assessment in children: current research issues. Neuropsychol Rev 2008; 18: 214–222.CrossRefGoogle ScholarPubMed
Arevalo, M, Heredia, NI, Krasny, S, et al. Mexican-American perspectives on participation in clinical trials: A qualitative study. Contemp Clin Trials Commun 2016; 4: 52–57.CrossRefGoogle ScholarPubMed
Clark, LT, Watkins, L, Pina, IL, et al. Increasing Diversity in Clinical Trials: overcoming Critical Barriers. Cur. Prob. Cardio. 2019; 44: 148–172.CrossRefGoogle ScholarPubMed
Erves, JC, Mayo-Gamble, TL, Malin-Fair, A, et al. Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective. J Community Health 2017; 42: 472–480.CrossRefGoogle ScholarPubMed
Haley, SJ, Southwick, LE, Parikh, MS, et al. Barriers and Strategies for Recruitment of Racial and Ethnic Minorities: perspectives from Neurological Clinical Research Coordinators. J Racial Ethn Health Disparities 2017; 4: 1225–1236.CrossRefGoogle ScholarPubMed
Loccoh, EC, Yu, S, Donohue, J, et al. Prevalence and risk factors associated with non-attendance in neurodevelopmental follow-up clinic among infants with CHD. Cardiol Young 2018; 28: 554–560.CrossRefGoogle ScholarPubMed
Rivera Mindt, M, Arentoft, A, Germano, KK, et al. Neuropsychological, Cognitive, and Theoretical Considerations for Evaluation of Bilingual Individuals. Neuropsychol Rev 2008; 18: 255–268.CrossRefGoogle ScholarPubMed
Olson, K, Jacobson, K Cross-Cultural Considerations in Pediatric Neuropsychology: A Review and Call to Attention. Appl Neuropsychol Child 2015; 4: 166–177.CrossRefGoogle ScholarPubMed
Shuttleworth-Edwards, AB Generally representative is representative of none: commentary on the pitfalls of IQ test standardization in multicultural settings. Clin Neuropsychol 2016; 30: 975–998.CrossRefGoogle ScholarPubMed
Rivera Mindt, M, Byrd, D, Saez, P, et al. Increasing culturally competent neuropsychological services for ethnic minority populations: a call to action. Clin Neuropsychol 2019; 24: 429–453.CrossRefGoogle Scholar
Glymour, MM, Weuve, J, Chen, JT Methodological Challenges in Causal Research on Racial and Ethnic Patterns of Cognitive Trajectories: measurement, Selection, and Bias. Neuropsychol Rev 2008; 18: 194–213.CrossRefGoogle ScholarPubMed
Pedraza, O, Mungas, D Measurement in Cross-Cultural Neuropsychology. Neuropsychol Rev 2008; 18: 184–193.CrossRefGoogle ScholarPubMed
Ryan, C Language Use in the United States, 2011: American Community Survey Reports. U. S. Census Bur. 16 (2013).Google Scholar
Brickman, AM, Cabo, R, Manly, JJ Ethical issues in cross-cultural neuropsychology. Appl Neuropsychol 2006; 13: 91–100.CrossRefGoogle ScholarPubMed
Judd, T, Capetillo, D, Carrion-Baralt, J, et al. Professional Considerations for Improving the Neuropsychological Evaluation of Hispanics: A National Academy of Neuropsychology Education Paper. Arch Clin Neuropsychol 2009; 24: 127–135.CrossRefGoogle ScholarPubMed
Elbulok-Charcape, M, Rabin, L, Spadaccini, A, et al. Trends in the neuropsychological assessment of ethnic/racial minorities: A survey of clinical neuropsychologists in the United States and Canada. Cultur Divers Ethnic Minor Psychol 2014; 20: 353–361.CrossRefGoogle ScholarPubMed
Gaies, M, Anderson, J, Kipps, A, et al. Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network. Cardiol Young 2019; 29: 111–118.CrossRefGoogle ScholarPubMed