Hostname: page-component-586b7cd67f-l7hp2 Total loading time: 0 Render date: 2024-11-28T06:18:14.996Z Has data issue: false hasContentIssue false
  • English
  • Français

Neurodevelopmental and psychosocial interventions for individuals with CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative

Published online by Cambridge University Press:  04 June 2021

Adam R Cassidy ,
Samantha C Butler Open the ORCID record for Samantha C Butler [Opens in a new window] ,
Jennie Briend ,
Johanna Calderon ,
Frank Casey ,
Lori E Crosby ,
Jennifer Fogel ,
Naomi Gauthier Open the ORCID record for Naomi Gauthier [Opens in a new window] ,
Carol Raimondi  and
Bradley S Marino
...Show all authors
Adam R Cassidy*
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Samantha C Butler
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Jennie Briend
Affiliation:
Sisters by Heart, El Segundo, CA, USA
Johanna Calderon
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Frank Casey
Affiliation:
Paediatric Cardiology Belfast Trust, Royal Belfast Hospital for Sick Children, Belfast, Northern Ireland
Lori E Crosby
Affiliation:
Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA
Jennifer Fogel
Affiliation:
Advocate Children’s Hospital, Oak Lawn, IL, USA
Naomi Gauthier
Affiliation:
Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Carol Raimondi
Affiliation:
Conquering CHD, Madison, WI, USA
Bradley S Marino
Affiliation:
Department of Pediatric Cardiology, Cleveland Clinic Children’s Hospital, Cleveland, OH, USA
Erica Sood
Affiliation:
Nemours Cardiac Center & Nemours Center for Healthcare Delivery Science, Alfred I. duPont Hospital for Children, Wilmington, Delaware, USA; Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA
Jennifer L Butcher
Affiliation:
C. S. Mott Children’s Hospital, Michigan Medicine, Ann Arbor, MI, USA
*
Author for correspondence: Adam R. Cassidy, Department of Psychiatry and Psychology, Mayo Clinic, Rochester, Minnesota, USA. Tel: +1 507-284-2649; Fax: +1 507-284-4158. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

In 2018, the Neurodevelopmental and Psychosocial Interventions Working Group of the Cardiac Neurodevelopmental Outcome Collaborative convened through support from an R13 grant from the National Heart, Lung, and Blood Institute to survey the state of neurodevelopmental and psychosocial intervention research in CHD and to propose a slate of critical questions and investigations required to improve outcomes for this growing population of survivors and their families. Prior research, although limited, suggests that individualised developmental care interventions delivered early in life are beneficial for improving a range of outcomes including feeding, motor and cognitive development, and physiological regulation. Interventions to address self-regulatory, cognitive, and social-emotional challenges have shown promise in other medical populations, yet their applicability and effectiveness for use in individuals with CHD have not been examined. To move this field of research forward, we must strive to better understand the impact of neurodevelopmental and psychosocial intervention within the CHD population including adapting existing interventions for individuals with CHD. We must examine the ways in which dedicated cardiac neurodevelopmental follow-up programmes bolster resilience and support children and families through the myriad transitions inherent to the experience of living with CHD. And, we must ensure that interventions are person-/family-centred, inclusive of individuals from diverse cultural backgrounds as well as those with genetic/medical comorbidities, and proactive in their efforts to include individuals who are at highest risk but who may be traditionally less likely to participate in intervention trials.

Keywords

CHDdevelopmental careinterventionneurodevelopmental outcomespsychosocial outcomes
Type
Review
Information
Cardiology in the Young , Volume 31 , Issue 6 , June 2021 , pp. 888 - 899
Check for updates
Copyright
© The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

Adam R. Cassidy is now at the Mayo Clinic, Rochester, MN, USA.

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. doi: 10.1017/S1047951120003509.CrossRefGoogle ScholarPubMed
Marino, BS, Sood, E, Cassidy, AR, et al. The origins and development of the cardiac neurodevelopment outcome collaborative : creating innovative clinical, quality improvement, and research opportunities. Cardiol Young 2020; 30: 1597–1602. doi: 10.1017/S1047951120003510.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. doi: 10.1017/S1047951120003522.CrossRefGoogle ScholarPubMed
Ware, J, Butcher, J, Latal, B, et al. Neurodevelopmental evaluation strategies for children with complex congenital heart disease aged birth through five years: recommendations from the cardiac neurodevelopmental outcome collaborative. Cardiol Young 2020; 30: 1609–1622.CrossRefGoogle Scholar
Ilardi, D, Sanz, J, 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, J, Marino, BS Optimizing neurodevelopmental and psychosocial outcomes for survivors with congenital heart disease: a research agenda for the next decade. Cardiol Young 2021; 31 (This issue).CrossRefGoogle Scholar
Sanz, JH, Anixt, J, Bear, L, et al. Characterization of Neurodevelopmental and Psychological Outcomes in Congenital Heart Disease: A research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative. Cardiol Young 2021; 31 (This issue).CrossRefGoogle Scholar
Sood, E, Lisanti, A, Woolf-King, S, 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. Cardiol Young 2021; 31 (This Issue).CrossRefGoogle Scholar
Wilson, WM, Smith-Parrish, M, Marino, BS, Kovacs, AH Progress in Pediatric Cardiology Neurodevelopmental and psychosocial outcomes across the congenital heart disease lifespan. Prog Pediatr Cardiol 2015; 39: 113–118. doi: 10.1016/j.ppedcard.2015.10.011.CrossRefGoogle Scholar
Cassidy, AR, Ilardi, D, Bowen, SR, et al. Congenital heart disease: A primer for the pediatric neuropsychologist. Child Neuropsychol 2018; 24: 859–902. doi: 10.1080/09297049.2017.1373758.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. doi: 10.1161/CIR.0b013e318265ee8a.CrossRefGoogle ScholarPubMed
Calderon, J, Bellinger, DC Executive function deficits in congenital heart disease: why is intervention important? Cardiol Young 2015; (JANUARY): 1–9. doi: 10.1017/S1047951115001134.CrossRefGoogle Scholar
Tesson, S, Wales, NS, Butow, PN, et al. Psychological Interventions for People Affected by Childhood-Onset Heart Disease : A Systematic Review. 2019; 38: 151–161.Google Scholar
Black, M A multi-level, biobehavioral, lifespan perspective. In: Roberts, M, Steele, R, eds. Handbook of Pediatric Psychology. 5th ed. Guilford Press; 2017.Google Scholar
Craig, P, Dieooe, P, Macintyre, S, Michie, S, Nazareth, I, Petticrew, M Developing and evaluating complex interventions: Following considerable development in the field since 2006, MRC and NIHR have jointly commissionned an update of this guidance to be published in 2019. Med Res Counc. Published online 2019: 1–39. https://mrc.ukri.org/documents/pdf/complex-interventions-guidance/.Google Scholar
Czajkowski, SM, Powell, LH, Adler, N, et al. From Idea to Efficacy: the ORBIT Model for Developing Behavioral Treatments for Chronic Diseases. Heal Psychol 2015; 34: 971–982. doi: 10.1037/hea0000161.From.CrossRefGoogle Scholar
Butler, SC, Huyler, K, Kaza, A, Rachwal, C Filling a significant gap in the cardiac ICU: implementation of individualised developmental care. Cardiol Young Published online 2017: 1–10. doi: 10.1017/S1047951117001469.CrossRefGoogle Scholar
Als, H Program Guide—Newborn Individualized Developmental Care and Assessment Program (NIDCAP): An Education and Training Program for Health Care Professionals. NIDCAP Federation International.Google Scholar
Als, H, Lawhon, G, Duffy, FH, Mcanulty, GB, Gibes-Grossman, R, Blickman, JG Individualized Developmental Care for the Very Low - Birth - Weight Preterm Infant Medical and Neurofunctional Effects. J Am Med Assoc 1994; 272: 853–858. doi: 10.1001/jama.272.11.853.CrossRefGoogle ScholarPubMed
Als, H, Gilkerson, L, Duffy, FH, et al. A three-center, randomized, controlled trial of individualized developmental care for very low birth weight preterm infants: Medical, neurodevelopmental, parenting, and caregiving effects. J Dev Behav Pediatr 2003; 24: 399–408. doi: 10.1097/00004703-200312000-00001.CrossRefGoogle ScholarPubMed
Als, H, Duffy, FH, McAnulty, GB, et al. Early Experience Alters Brain Function and Structure. Pediatrics 2004; 113: 846–857. doi: 10.1542/peds.113.4.846.CrossRefGoogle ScholarPubMed
Ko, SJ, Ford, JD, Kassam-Adams, N, et al. Creating Trauma-Informed Systems: child Welfare, Education, First Responders, Health Care, Juvenile Justice. Prof Psychol Res Pract 2008; 39: 396–404. doi: 10.1037/0735-7028.39.4.396.CrossRefGoogle Scholar
Kassam-Adams, N, Marsac, ML, Hildenbrand, A, Winston, F Posttraumatic stress following pediatric injury update on diagnosis, risk factors, and intervention. JAMA Pediatr 2013; 167: 1158–1165. doi: 10.1001/jamapediatrics.2013.2741.CrossRefGoogle ScholarPubMed
Stuber, ML, Schneider, S, Kassam-Adams, N, Kazak, AE, Saxe, G The medical traumatic stress toolkit. CNS Spectr 2006; 11: 137–142. doi: 10.1017/s1092852900010671.CrossRefGoogle ScholarPubMed
Miller, TA, Lisanti, AJ, Witte, MK, et al. A Collaborative Learning Assessment of Developmental Care Practices for Infants in the Cardiac Intensive Care Unit. J Pediatr Published online 2020. doi: 10.1016/j.jpeds.2020.01.043.CrossRefGoogle Scholar
Sood, E, Berends, WM, Butcher, JL, et al. Developmental Care in North American Pediatric Cardiac Intensive Care Units: survey of Current Practices. Adv Neonatal Care 2016; 16: 211–219. doi: 10.1097/ANC.0000000000000264.Developmental.CrossRefGoogle ScholarPubMed
Lisanti, AJ, Vittner, D, Medoff-Cooper, B, Fogel, J, Wernovsky, G, Butler, S Individualized Family-Centered Developmental Care. J Cardiovasc Nurs 2018; 1. doi: 10.1097/JCN.0000000000000546.CrossRefGoogle Scholar
Lisanti, AJ, Vittner, D, Medoff-Cooper, B, Fogel, J, Wernovsky, G, Butler, S Individualized Family-Centered Developmental Care: an Essential Model to Address the Unique Needs of Infants with Congenital Heart Disease. J Cardiovasc Nurs 2019; 34: 85–93. doi: 10.1097/JCN.0000000000000546.CrossRefGoogle ScholarPubMed
Peterson, JK, Evangelista, LS Developmentally Supportive Care in Congenital Heart Disease: A Concept Analysis. J Pediatr Nurs 2017; 36: 1–7. doi:https://doi.org/10.1016/j.pedn.2017.05.007.CrossRefGoogle ScholarPubMed
Peterson, JK Supporting optimal neurodevelopmental outcomes in infants and children with congenital heart disease. Crit Care Nurse 2018; 38: 68–74.CrossRefGoogle ScholarPubMed
Harrison, TM, Chen, CY, Stein, P, Brown, R, Heathcock, JC Neonatal Skin-to-Skin Contact: Implications for Learning and Autonomic Nervous System Function in Infants With Congenital Heart Disease. Biol Res Nurs 2019; 21: 296–306. doi: 10.1177/1099800419827599.CrossRefGoogle ScholarPubMed
Brown Belfort, M The Science of Breastfeeding and Brain Development. Breastfeed Med Off J Acad Breastfeed Med 2017; 12: 459–461. doi: 10.1089/bfm.2017.0122.CrossRefGoogle ScholarPubMed
Combs, V, Marino, BS A comparison of growth patterns in breast and bottle-fed infants with congenital heart disease. Pediatr Nurs 1993; 19: 175–179.Google ScholarPubMed
Kramer, MS, Aboud, F, Mironova, E, et al. Breastfeeding and child cognitive development: new evidence from a large randomized trial. Arch Gen Psychiatry 2008; 65: 578–584. doi: 10.1001/archpsyc.65.5.578.CrossRefGoogle ScholarPubMed
Nores, M, Barnett, WS Benefits of early childhood interventions across the world: (Under) Investing in the very young. Econ Educ Rev 2010; 29: 271–282.CrossRefGoogle Scholar
Majnemer, A Benefits of early intervention for children with developmental disabilities. Semin Pediatr Neurol 1998; 5: 62–69. doi: 10.1016/S1071-9091(98)80020-X.CrossRefGoogle ScholarPubMed
Olds, DL, Kitzman, H, Cole, R, et al. Effects of Nurse Home-Visiting on Maternal Life Course and Child Development: age 6 Follow-Up Results of a Randomized Trial. Pediatrics 2004; 114: 1550–1559. doi: 10.1542/peds.2004-0962.CrossRefGoogle ScholarPubMed
Eckenrode, J, Campa, M, Luckey, DW, et al. Long-term Effects of Prenatal and Infancy Nurse Home Visitation on the Life Course of Youths. Arch Pediatr Adolesc Med 2010; 164: 9–16. doi: 10.1001/archpediatrics.2009.240.CrossRefGoogle ScholarPubMed
Wolraich, ML, Hagan, JF, Allan, C, et al. Clinical practice guideline for the diagnosis, evaluation, and treatment of attention-deficit/hyperactivity disorder in children and adolescents. Pediatrics 2019; 144. doi: 10.1542/peds.2019-2528.CrossRefGoogle Scholar
Vetter, VL, Blum, N, Berger, S, et al. Cardiovascular Monitoring of Children and Adolescents With Heart Disease Receiving Medications for Attention Deficit/Hyperactivity Disorder. Circulation 2008; 117: 2407–2423. doi: 10.1161/circulationaha.107.189473.CrossRefGoogle ScholarPubMed
David-Ferdon, C, Kaslow, NJ Evidence-Based Psychosocial Treatments for Child and Adolescent Depression. Vol 37.; 2008. doi: 10.1080/15374410701817865.CrossRefGoogle Scholar
Wang, Z, Whiteside, SPH, Sim, L, et al. Comparative effectiveness and safety of cognitive behavioral therapy and pharmacotherapy for childhood anxiety disorders: A systematic review and meta-analysis. JAMA Pediatr 2017; 171: 1049–1056. doi: 10.1001/jamapediatrics.2017.3036.CrossRefGoogle ScholarPubMed
Hetrick, SE, McKenzie, JE, Cox, GR, Simmons, MB, Merry, SN Newer generation antidepressants for depressive disorders in children and adolescents. BJPsych Adv 2017; 23: 74–74. doi: 10.1192/apt.23.2.74.CrossRefGoogle Scholar
Cohen, L, Blount, R, Chorney, J, Zempsky, W, Rodrigues, N, Cousins, L. Management of pediatric pain and distress due to medical procedures. In: Roberts, M, Steele, R, eds. Handbook Pediatric Psychology, 5th Edition. The Guilford Press; 2018.Google Scholar
Harbeck-Weber, C, Fisher, JL, Dittner, CA Promoting Coping and Enhancing Adaptation to Illness. In: Roberts, M, ed. Handbook of Pediatric Psychology. The Guilford Press; 2003: 99–118.Google Scholar
Lane, DA, Millane, TA, Lip, GYH Psychological interventions for depression in adolescent and adult congenital heart disease. Cochrane Database Syst Rev 2013; 2013. doi: 10.1002/14651858.CD004372.pub2.CrossRefGoogle Scholar
Melby-Lervåg, M, Hulme, C Is working memory training effective? A meta-analytic review. Dev Psychol 2013; 49: 270–291. doi: 10.1037/a0028228.CrossRefGoogle ScholarPubMed
Diamond, A, Ling, DS Conclusions about interventions, programs, and approaches for improving executive functions that appear justified and those that, despite much hype, do not. Dev Cogn Neurosci. Published online 2015. doi: 10.1016/j.dcn.2015.11.005.CrossRefGoogle Scholar
Martiniuk, A, Silva, M, Amylon, M, Barr, R Camp programs for children with cancer and their families: review of research progress over the past decade. Pediatr Blood Cancer 2014; 61: 778–787.CrossRefGoogle ScholarPubMed
Gomez-Gascon, T, Martin-Fernandez, J, Galvez-Herrer, M, Tapias-Merino, E, Beamud-Lagos, M, Mingote-Adan, JC Effectiveness of an intervention for prevention and treatment of burnout in primary health care professionals. BMC Fam Pract 2013; 14: 173. doi: 10.1186/1471-2296-14-173.CrossRefGoogle ScholarPubMed
Sawyer, SM, Drew, S, Yeo, MS, Britto, MT Adolescents with a chronic condition: challenges living, challenges treating. Lancet 2007; 369: 1481–1489. doi: 10.1016/S0140-6736(07)60370-5.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. doi: 10.1016/j.jtcvs.2016.02.035.CrossRefGoogle ScholarPubMed
Gaynor, JW, Stopp, C, Wypij, D, et al. Impact of Operative and Postoperative Factors on Neurodevelopmental Outcomes After Cardiac Operations. Ann Thorac Surg 2016; 102: 843–849. doi: 10.1016/j.athoracsur.2016.05.081.CrossRefGoogle Scholar
Newburger, JW, Wypij, D, Bellinger, DC, et al. Length of stay after infant heart surgery is related to cognitive outcome at age 8 years. J Pediatr 2003; 143: 67–73. doi: 10.1016/S0022-3476(03)00183-5.CrossRefGoogle ScholarPubMed
Gaynor, JW, Ittenbach, RF, Calafat, AM, et al. Perioperative Exposure to Suspect Neurotoxicants from Medical Devices in Newborns with Congenital Heart Defects. Ann Thorac Surg. Published online 2018. doi: 10.1016/j.athoracsur.2018.06.035.CrossRefGoogle Scholar
Ryan, K, Jones, M, Allen, K, et al. Neurodevelopmental Outcomes Among Children With Congenital Heart Disease: At-Risk Populations and Modifiable Risk Factors. World J Pediatr Congenit Hear Surg 2019; 10: 750–758.CrossRefGoogle ScholarPubMed
Ross, ES, Browne, JV Developmental progression of feeding skills: an approach to supporting feeding in preterm infants. Semin Neonatol 2002; 7: 469–475. doi: 10.1053/siny.2002.0152.CrossRefGoogle ScholarPubMed
Horner, S, Simonelli, AM, Schmidt, H, et al. Setting the stage for successful oral feeding: the impact of implementing the SOFFI feeding program with medically fragile NICU infants. J Perinat Neonatal Nurs 2014; 28: 59–68. doi: 10.1097/JPN.0000000000000003.CrossRefGoogle ScholarPubMed
Spatz, DL State of the science: use of human milk and breast-feeding for vulnerable infants. J Perinat Neonatal Nurs 2006; 20: 51–55. doi: 10.1097/00005237-200601000-00017.CrossRefGoogle ScholarPubMed
Barbas, KH, Kelleher, DK Breastfeeding success among infants with congenital heart disease. Pediatr Nurs 2004; 30: 285–289.Google ScholarPubMed
Medoff-Cooper, B, Irving, SY, Marino, BS, et al. Weight change in infants with a functionally univentricular heart: from surgical intervention to hospital discharge. Cardiol Young 2011; 21: 136–144. doi: 10.1017/S104795111000154X.CrossRefGoogle ScholarPubMed
Imms, C Impact on parents of feeding young children with congenital or acquired cardiac disease. Cardiol Young 2000; 10: 574–581.CrossRefGoogle ScholarPubMed
Furlong-Dillard, J, Neary, A, Marietta, J, et al. Evaluating the Impact of a Feeding Protocol in Neonates before and after Biventricular Cardiac Surgery. Pediatr Qual Saf 2018; 3: e080. doi: 10.1097/pq9.0000000000000080.CrossRefGoogle ScholarPubMed
Roberts, M, Steele, R, eds. Handbook of Pediatric Psychology, Fifth Edition. The Guilford Press; 2018.Google Scholar
Stuckey, R, Domingues-Montanari, S Telemedicine is helping the parents of children with neurodevelopmental disorders living in remote and deprived areas. Paediatr Int Child Health 2017; 37: 155–157. doi: 10.1080/20469047.2017.1315914.CrossRefGoogle ScholarPubMed
Young, K, Gupta, A, Palacios, R Impact of Telemedicine in Pediatric Postoperative Care. Telemed e-Health 2018; 25: 1–7. doi: 10.1089/tmj.2018.0246.Google ScholarPubMed
March, S, Spence, SH, Donovan, CL The Efficacy of an Internet-based CBT Intervention for Child Anxiety Disorders. J Pediatr Psychol 2009; 34: 474–487.CrossRefGoogle ScholarPubMed
Indramohan, G, Pedigo, TP, Rostoker, N, Cambare, M, Grogan, T, Federman, MD Identification of Risk Factors for Poor Feeding in Infants with Congenital Heart Disease and a Novel Approach to Improve Oral Feeding. J Pediatr Nurs 2017; 35: 149–154. doi: 10.1016/j.pedn.2017.01.009.CrossRefGoogle Scholar
Weston, C, Husain, SA, Curzon, CL, et al. Improving Outcomes for Infants with Single Ventricle Physiology through Standardized Feeding during the Interstage. Nurs Res Pract Published online 2016: 1–7. doi: 10.1155/2016/9505629.CrossRefGoogle Scholar
Harrison, TM, Brown, R Autonomic Nervous System Function after a Skin-to-Skin Contact Intervention in Infants with Congenital Heart Disease. J Cardiovasc Nurs 2017; 32: E1–E13. doi: 10.1097/JCN.0000000000000397.CrossRefGoogle ScholarPubMed
McCusker, CG, Doherty, NN, Molloy, B, et al. A controlled trial of early interventions to promote maternal adjustment and development in infants born with severe congenital heart disease. Child Care Health Dev 2010; 36: 110–117. doi: 10.1111/j.1365-2214.2009.01026.x.CrossRefGoogle ScholarPubMed
McCusker, CG, Doherty, NN, Molloy, B, et al. Determinants of neuropsychological and behavioural outcomes in early childhood survivors of congenital heart disease. Arch Dis Child 2007; 92: 137–141. doi: 10.1136/adc.2005.092320.CrossRefGoogle ScholarPubMed
McCusker, CG, Doherty, NN, Molloy, B, et al. A randomized controlled trial of interventions to promote adjustment in children with congenital heart disease entering school and their families. J Pediatr Psychol 2012; 37: 1089–1103. doi:jss092 [pii]\r10.1093/jpepsy/jss092.CrossRefGoogle ScholarPubMed
McCusker, CG, Armstrong, M, Mullen, M, Doherty, N, Casey, F A sibling-controlled, prospective study of outcomes at home and school in children with severe congenital heart disease. Cardiol Young 2013; 23: 507–516. doi: 10.1017/s1047951112001667.CrossRefGoogle ScholarPubMed
Casey, FA, Stewart, M, McCusker, CG, et al. Examination of the physical and psychosocial determinants of health behaviour in 4–5-year-old children with congenital cardiac disease. Cardiol Young 2010; 20: 532–537. doi: 10.1017/S1047951110000673.CrossRefGoogle ScholarPubMed
van der Mheen, M, Meentken, M, van Beynum, I, et al. CHIP-Family intervention to improve the psychosocial well-being of young children with congenital heart disease and their families: results of a randomised controlled trial. Cardiol Young Published online 2019: 1–11.Google Scholar
Calderon, J, Bellinger, DC, Hartigan, C, et al. Improving neurodevelopmental outcomes in children with congenital heart disease : protocol for a randomised controlled trial of working memory training. BMJ Open. Published online 2019: 1–10. doi: 10.1136/bmjopen-2018-023304.CrossRefGoogle Scholar
LeRoy, S, Elixson, EM, O’Brien, P, Tong, E, Turpin, S, Uzark, K Recommendations for Preparing Children and Adolescents for Invasive Cardiac Procedures. Circulation 2003; 108: 2550–2564. doi: 10.1161/01.cir.0000100561.76609.64.Google ScholarPubMed
Bellinger, DC Perspectives on incorporating human neurobehavioral end points in risk assessments. Risk Anal 2003; 23: 163–174. doi: 10.1111/j.1477-4658.1995.tb00318.x-i1.CrossRefGoogle ScholarPubMed
Cioni, G, Inguaggiato, E, Sgandurra, G Early intervention in neurodevelopmental disorders: Underlying neural mechanisms. Dev Med Child Neurol 2016; 58: 61–66. doi: 10.1111/dmcn.13050.CrossRefGoogle ScholarPubMed
Case-Smith, J Interventions to Promote Social-Emotional development in Young Children with or at Risk Disability. Am J Occup Ther 2013; 67: 395–404. doi: 10.5014/ajot.2013.004713.CrossRefGoogle ScholarPubMed
Burke, S Systematic review of developmental care interventions in the neonatal intensive care unit since 2006. J Child Heal Care 2018; 22: 269–286. doi: 10.1177/1367493517753085.CrossRefGoogle ScholarPubMed
Westrup, B Newborn Individualized Developmental Care and Assessment Program (NIDCAP) - Family-centered developmentally supportive care. Early Hum Dev 2007; 83: 443–449. doi: 10.1016/j.earlhumdev.2007.03.006.CrossRefGoogle ScholarPubMed
Spittle, Orton J, Anderson, P, Boyd, R, Doyle, L Early developmental intervention programs post hospital discharge to prevent motor and cognitive impairments in preterm infants What ’ s new Dates Text of review Synopsis. Cochrane Database Syst Rev 2015; 24. doi: 10.1002/14651858.CD005495.pub4.www.cochranelibrary.com.CrossRefGoogle Scholar
Horbar, JD SECTION 3 : CASE STUDIES The Vermont Oxford Network : evidence-Based Quality Improvement for. 1999; 103.Google Scholar
ACGME Program Requirements for Graduate Medical Education in Neonatal-Perinatal Medicine. Accreditation Council for Graduate Medical Education.; 2017. https://www.acgme.org/Portals/0/PFAssets/ProgramRequirements/329_neonatal-perinatal_medicine_2017-07-01.pdf?ver=2017-06-30-083415-990.Google Scholar
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. doi: 10.1097/MOP.0000000000000263.CrossRefGoogle ScholarPubMed
Walsh, KS, Noll, RB, Annett, RD, Patel, SK, Patenaude, AF, Embry, L Standard of Care for Neuropsychological Monitoring in Pediatric Neuro-Oncology: Lessons From the Children’s Oncology Group (COG). Pediatr Blood Cancer 2016; 63: 191–195. doi: 10.1002/pbc.CrossRefGoogle Scholar
Fink, AK, Loeffler, DR, Marshall, BC, Goss, CH, Morgan, WJ Data that empower: the success and promise of CF patient registries. Pediatr Pulmonol 2017; 52: S44–S51. doi: 10.1002/ppul.23790.CrossRefGoogle ScholarPubMed
Kazak, AE, Hwang, WT, Fang Chen, F, et al. Screening for family psychosocial risk in pediatric cancer: validation of the Psychosocial Assessment Tool (PAT) version 3. J Pediatr Psychol 2018; 43: 737–748. doi: 10.1093/jpepsy/jsy012.CrossRefGoogle ScholarPubMed
Hardy, KK, Olson, K, Sy, PD, et al. A Prevention-Based Model of Neuropsychological Assessment for Children With Medical Illness. J Pediatr Psychol Published online 2017: 1–8. doi: 10.1093/jpepsy/jsx060.CrossRefGoogle Scholar
Luthar, SS, Cicchetti, D The construct of resilience: implications for interventions and social policies. Dev Psychopathol 2000; 12: 857–885. doi: 10.1017/S0954579400004156.CrossRefGoogle Scholar
Ungar, M Practitioner review: diagnosing childhood resilience - A systemic approach to the diagnosis of adaptation in adverse social and physical ecologies. J Child Psychol Psychiatry Allied Discip 2015; 56: 4–17. doi: 10.1111/jcpp.12306.CrossRefGoogle Scholar
Traub, F, Boynton-Jarrett, R Modifiable Resilience Factors to Childhood Adversity for Clinical Pediatric Practice. Pediatrics 2017; 139: e20162569. doi: 10.1542/peds.2016-2569.CrossRefGoogle ScholarPubMed
Child NSC on the D. Supportive Relationships and Active Skill-Building Strengthen the Foundations of Resilience: Working Paper 13.; 2015. http://www.developingchild.harvard.edu.Google Scholar
Stewart, DE, Yuen, T A Systematic Review of Resilience in the Physically Ill. Psychosomatics 2011; 52: 199–209. doi: 10.1016/j.psym.2011.01.036.CrossRefGoogle ScholarPubMed
Meyerson, DA, Grant, KE, Carter, JS, Kilmer, RP Posttraumatic growth among children and adolescents: A systematic review. Clin Psychol Rev 2011; 31: 949–964. doi: 10.1016/j.cpr.2011.06.003.CrossRefGoogle ScholarPubMed
Sharkey, CM, Bakula, DM, Baraldi, AN, et al. Grit, illness-related distress, and psychosocial outcomes in college students with a chronic medical condition: A path analysis. J Pediatr Psychol 2018; 43: 552–560. doi: 10.1093/jpepsy/jsx145.CrossRefGoogle ScholarPubMed
Fisher, PA, Gunnar, MR, Dozier, M, Bruce, J, Pears, KC Effects of therapeutic interventions for foster children on behavioral problems, caregiver attachment, and stress regulatory neural systems. Ann N Y Acad Sci 2006; 1094: 215–225. doi: 10.1196/annals.1376.023.CrossRefGoogle ScholarPubMed
Huang, H-R, Chen, C-W, Chen, C-M, et al. A positive perspective of knowledge, attitude, and practices for health-promoting behaviors of adolescents with congenital heart disease. Eur J Cardiovasc Nurs 2018; 17: 217–225. doi: 10.1177/1474515117728609.CrossRefGoogle ScholarPubMed
Moon, JR, Huh, J, Kang, IS, Park, SW, Jun, TG, Lee, HJ Factors influencing depression in adolescents with congenital heart disease. Hear Lung J Acute Crit Care 2009; 38: 419–426. doi: 10.1016/j.hrtlng.2008.11.005.CrossRefGoogle ScholarPubMed
Moon, JR, Song, J, Huh, J, et al. The Relationship between Parental Rearing Behavior, Resilience, and Depressive Symptoms in Adolescents with Congenital Heart Disease. Front Cardiovasc Med 2017; 4: 1–8. doi: 10.3389/fcvm.2017.00055.CrossRefGoogle ScholarPubMed
Kovacs, AH, Bandyopadhyay, M, Grace, SL, et al. Adult Congenital Heart Disease-Coping And REsilience (ACHD-CARE): Rationale and methodology of a pilot randomized controlled trial. Contemp Clin Trials 2015; 45: 385–393. doi: 10.1016/j.cct.2015.11.002.CrossRefGoogle ScholarPubMed
Desai, PP, Sutton, LJ, Staley, MD, Hannon, DW A qualitative study exploring the psychosocial value of weekend camping experiences for children and adolescents with complex heart defects. Child Care Health Dev 2014; 40: 553–561. doi: 10.1111/cch.12056.CrossRefGoogle ScholarPubMed
Moons, P, Barrea, C, De Wolf, D, et al. Changes in perceived health of children with congenital heart disease after attending a special sports camp. Pediatr Cardiol 2006; 27: 67–72. doi: 10.1007/s00246-005-1021-5.CrossRefGoogle ScholarPubMed
Suys, B, Ovaert, C, Eyskens, B, et al. Improved perceived health status persists three months after a special sports camp for children with congenital heart disease. Eur J Pediatr 2006; 165: 767–772. doi: 10.1007/s00431-006-0171-7.Google Scholar
Simons, LE, Blount, RI, Campbell, R, et al. Decreases in anxiety associated with participation in a camp for children with cardiac defects. Cardiol Young 2007; 17: 631–637. doi: 10.1017/S1047951107001485.CrossRefGoogle Scholar
Walker, DA, Pearman, D Therapeutic recreation camps: an effective intervention for children and young people with chronic illness? Arch Dis Child 2009; 94: 401–406. doi: 10.1136/adc.2008.145631.CrossRefGoogle Scholar
Dulfer, K, Helbing, W, Utens, E The Influence of Exercise Training on Quality of Life and Psychosocial Functioning in Children with Congenital Heart Disease: A Review of Intervention Studies. Sports 2017; 5: 13. doi: 10.3390/sports5010013.CrossRefGoogle ScholarPubMed
Dulfer, K, Duppen, N, Kuipers, IM, et al. Aerobic exercise influences quality of life of children and youngsters with congenital heart disease: A randomized controlled trial. J Adolesc Heal 2014; 55: 65–72. doi: 10.1016/j.jadohealth.2013.12.010.CrossRefGoogle ScholarPubMed
Jacobsen, RM, Ginde, S, Mussatto, K, Neubauer, J, Earing, M, Danduran, M Can a Home-based Cardiac Physical Activity Program Improve the Physical Function Quality of Life in Children with Fontan Circulation? Congenit Heart Dis 2016; 11: 175–182. doi: 10.1111/chd.12330.CrossRefGoogle ScholarPubMed
Dean, PN, Gillespie, CW, Greene, EA, et al. Sports participation and quality of life in adolescents and young adults with congenital heart disease. Congenit Heart Dis 2015; 10: 169–179. doi: 10.1111/chd.12221.CrossRefGoogle Scholar
Dulfer, K, Helbing, WA, Duppen, N, Utens, EMWJ Associations between exercise capacity, physical activity, and psychosocial functioning in children with congenital heart disease: A systematic review. Eur J Prev Cardiol 2014; 21: 1200–1215. doi: 10.1177/2047487313494030.CrossRefGoogle ScholarPubMed
Takken, T, Giardini, A, Reybrouck, T, et al. Recommendations for physical activity, recreation sport, and exercise training in paediatric patients with congenital heart disease: a report from the Exercise, Basic & Translational Research Section of the European Association of Cardiovascular Preventio. Eur J Cardiovasc Prev Rehabil 2012; 19: 1034–1065.Google Scholar
Duppen, N, Takken, T, Hopman, MTE, et al. Systematic review of the effects of physical exercise training programmes in children and young adults with congenital heart disease. Int J Cardiol 2013; 168: 1779–1787. doi: 10.1016/j.ijcard.2013.05.086.CrossRefGoogle Scholar
Lisanti, AJ Parental stress and resilience in CHD: A new frontier for health disparities research. Cardiol Young 2018; 28: 1142–1150. doi: 10.1017/S1047951118000963.CrossRefGoogle ScholarPubMed
Loprinzi, CE, Prasad, K, Schroeder, DR, Sood, A Stress management and resilience training (SMART) program to decrease stress and enhance resilience among breast cancer survivors: A pilot randomized clinical trial. Clin Breast Cancer 2011; 11: 364–368. doi: 10.1016/j.clbc.2011.06.008.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. http://www.ncbi.nlm.nih.gov/pubmed/12394519.CrossRefGoogle ScholarPubMed
Penny, DJ Speaking to children and their families about congenital heart disease : ushering in a new era of healthcare literacy. Congenit Heart Dis 2017; 12: 241. doi: 10.1111/chd.12474.CrossRefGoogle Scholar
Wiener, L, Kazak, AE, Noll, RB, Patenaude, AF, Kupst, MJ Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue. Pediatr Blood Cancer 2015; 62: S419–S424. doi: 10.1002/pbc.25675.CrossRefGoogle ScholarPubMed
Northman, L, Ross, S, Morris, M, Tarquini, S Supporting Pediatric Cancer Survivors With Neurocognitive Late Effects: A Model of Care. J Pediatr Oncol Nurs 2015; 32: 134–142. doi: 10.1177/1043454214554012.CrossRefGoogle ScholarPubMed
Northman, L, Morris, M, Loucas, C, et al. The Effectiveness of a Hospital-Based School Liaison Program : A Comparative Study of Parental Perception of School Supports for Children With Pediatric Cancer and Neurofibromatosis Type 1. Published online 2018. doi: 10.1177/1043454218765140.CrossRefGoogle Scholar
Cassidy, AR, White, MT, DeMaso, DR, Newburger, JW, Bellinger, DC Executive Function in Children and Adolescents with Critical Cyanotic Congenital Heart Disease. J Int Neuropsychol Soc 2015; 20: 34–49. doi: 10.1017/S1355617714001027.CrossRefGoogle Scholar
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. Congenit Heart Dis 2016;(May). doi: 10.1111/chd.12427.CrossRefGoogle Scholar
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. doi: 10.1016/j.jacc.2013.02.048.CrossRefGoogle Scholar
Yeung, E, Kay, J, Roosevelt, GE, Brandon, M, Yetman, AT Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008; 125: 62–65. doi: 10.1016/j.ijcard.2007.02.023.CrossRefGoogle Scholar
Grady, KL, Hof, KV, Andrei, AC, et al. Pediatric Heart Transplantation: transitioning to Adult Care (TRANSIT): baseline Findings. Pediatr Cardiol 2018; 39: 354–364. doi: 10.1007/s00246-017-1763-x.CrossRefGoogle ScholarPubMed
Mackie, AS, Rempel, GR, Kovacs, AH, et al. Transition Intervention for Adolescents With Congenital Heart Disease. J Am Coll Cardiol 2018; 71: 1768–1777. doi: 10.1016/j.jacc.2018.02.043.CrossRefGoogle ScholarPubMed
Li, G, Sajobi, TT, Menon, BK, et al. Registry-based randomized controlled trials- what are the advantages, challenges, and areas for future research? J Clin Epidemiol 2016; 80: 16–24. doi: 10.1016/j.jclinepi.2016.08.003.CrossRefGoogle ScholarPubMed
Lauer, M, D’Agostino, R The Randomized Registry Trial — The Next Disruptive Technology in Clinical Research? N Engl J Med 2013; 369: 1577–1579. doi: 10.1056/NEJMp1310771.CrossRefGoogle ScholarPubMed