Restricted accessResearch articleFirst published online 2014-06
Monitoring Developmental Risk and Promoting Success for Children With Congenital Heart Disease: Recommendations for Cardiac Neurodevelopmental Follow-Up Programs
Survival of children born with complex congenital heart disease (CHD) has improved dramatically in recent years. However, research studies document high rates of neurologic abnormality and neurodevelopmental impairment in this patient population. The American Heart Association (AHA) and American Academy of Pediatrics (AAP) recently released guidelines for developmental screening, surveillance, and evaluation of children with CHD. The AHA and AAP jointly developed the guidelines in light of increased awareness of long-term cognitive, behavioral, and social sequelae of CHD and the underutilization of remedial services and supports that address these concerns. The guidelines provide an impetus for hospitals to incorporate formal neurodevelopmental follow-up as an integral component of cardiac care. Existing cardiac neurodevelopment programs are rapidly emerging in the United States, Canada, and abroad. Members of the Society of Pediatric Psychology’s Cardiology Special Interest Group collaborated in this effort to describe the essential components of cardiac neurodevelopmental follow-up programs, review implementation and program development challenges, and consider future directions for the field of cardiac neurodevelopment.
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References
1.
AlsH.ButlerS.KostaS., & McAnultyG. (2005). The assessment of preterm infants’ behavior (APIB): Furthering the understanding and measurement of neurodevelopmental competence in preterm and fullterm infants. Mental Retardation and Developmental Disabilities Research Reviews, 11, 94–102. doi:10.1002/mrdd.20053
2.
AlsH.LesterB. M.TronickE. Z., & BrazeltonT. B. (1982). Manual for the assessment of preterm infants’ behavior (APIB). In FitzgeraldH. E.LesterB. M., & YogmanM. W. (Eds.), Theory and research in behavioral pediatrics (Vol. 1, pp. 35–132). New York, NY: Plenum Press. doi:10.1007/978-1-4899-0442-3_2
3.
AndersonL. M.ShinnC.FulliloveM. T.ScrimshawS. C.FieldingJ. E.NormandJ., . . .the Task Force on Community Preventative Services. (2003). The effectiveness of early childhood development programs: A systematic review. American Journal of Preventative Medicine, 24, 32–46. doi:10.1016/S0749-3797(02)00655-4
4.
BellingerD. C., & NewburgerJ. (2013). Late neurodevelopmental outcomes in children with congenital heart disease. In BaronI. S. & Rey-CasserlyC. (Eds.), Pediatric neuropsychology: Medical advances and lifespan outcomes (pp. 91–112). New York, NY: Oxford University Press.
5.
BellingerD. C.NewburgerJ.WypijD.KubanK.duPlessisA., & RappaportL. (2009). Behavior at eight years in children with surgically corrected transposition: The Boston circulatory arrest trial. Cardiology in the Young, 19, 86–97. doi:10.1017/S1047951108003454
6.
BellingerD. C.WypijD.duPlessisA. J.RappaportL. A.JonasR. A.WernovskyG., & NewburgerJ. W. (2003). Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: The Boston Circulatory Arrest Trial. Journal of Thoracic and Cardiovascular Surgery, 126, 1385–1396. doi:10.1016/S0022-5223(03)00711-6
7.
BellingerD. C.WypijD.RivkinM. J.DeMasoD. R.RobertsonR. L.Jr.Dunbar-MastersonC., . . .NewburgerJ. W. (2011). Adolescents with d-transposition of the great arteries corrected with the arterial switch procedure: Neuropsychological assessment and structural brain imaging. Circulation, 124, 1361–1369. doi:10.1161/CIRCULATIONAHA.111.026963
8.
BoctorD.Pillo-BlockaF., & McCrindleB. W. (1999). Nutrition after cardiac surgery for infants with congenital heart disease. Nutrition in Clinical Practice, 14, 111–115. doi:10.1177/088453369901400303
9.
BrazeltonT. B. (1973). Neonatal Behavioral Assessment Scale. London, UK: Heinemann.
10.
BrazeltonT. B., & NugentJ. K. (1995). Neonatal Behavioral Assessment Scale (3rd ed. Vol. 137). London, UK: Mac Keith Press.
11.
BrosigC. L. (2012). Commentary: The use of health and behavior codes in a pediatric cardiology setting. Journal of Pediatric Psychology, 37, 514–518. doi:10.1093/jpepsy/jsr125
12.
BrosigC.ButcherJ.IlardiD.SananesR.SanzJ. H.SoodE., . . .WareJ. (in press). Supporting development in children with congenital heart disease. Circulation.
13.
BrosigC.MussattoK.KuhnE., & TweddellJ. (2007). Psychosocial outcomes for preschool children and their families after surgery for complex congenitally malformed hearts. Pediatric Cardiology, 28, 255–262. doi:10.1007/s00246-006-0013-4
14.
Brosig SotoC.OludeO.HoffmannR. G.BearL.ChinA.DasguptaM., & MussattoK. (2011). Implementation of a routine developmental follow-up program for children with congenital heart disease: Early results. Congenital Heart Disease, 6, 451–460. doi:10.1111/j.1747-0803.2011.00546.x
15.
CaseyF. A.StewartM.McCuskerC. G.MorrisonM. L.MolloyB.DohertyN. N., & MulhollandH. C. (2010). Examination of the physical and psychosocial determinants of health behavior in 4–5 year old children with congenital heart disease. Cardiology in the Young, 20, 532–537. doi:10.1017/S1047951110000673
16.
ClouchouxC.du PlessisA. J.Bouyssi-KobarM.TworetzkyW.McElhinneyD. B.BrownD. W., . . .LimperopoulosC. (2013). Delayed cortical development in fetuses with complex congenital heart disease. Cerebral Cortex, 23, 2932–2943. doi:10.1093/cercor/bhs281
17.
DavisC.BrownR. T.BakemanR., & CampbellR. (1998). Psychological adaptation and adjustment of mothers of children with congenital heart disease: Stress, coping, and family functioning. Journal of Pediatric Psychology, 23, 219–228. doi:10.1093/jpepsy/23.4.219
18.
DavisD.DavisS.CotmanK.WorleyS.LondricoD.KennyD., & HarrisonA. M. (2008). Feeding difficulties and growth delay in children with hypoplastic left heart syndrome versus d-transposition of the great arteries. Pediatric Cardiology, 29, 328–333. doi:10.1007/s00246-007-9027-9
19.
DeMasoC.CampisL.WypijD.BertramS.LipshitaM., & FreedM. (1991). The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. Journal of Pediatric Psychology, 16, 137–149. doi:10.1093/jpepsy/16.2.137
20.
DimitropoulosA.McQuillenP. S.SethiV.MoosaA.ChauV.XuD., . . .MillerS. P. (2013). Brain injury and development in newborns with critical congenital heart disease. Neurology, 81, 241–248. doi:10.1212/WNL.0b013e31829bfdcf
21.
DohertyN. N.McCuskerC. G.MolloyB.MulhollandH. C.RooneyN.CraigB., . . .CaseyF. (2009). Predictors of psychological functioning in mothers and fathers of infants born with severe congenital heart disease. Journal of Reproductive and Infant Psychology, 27, 390–400. doi:10.1080/02646830903190920
22.
ElliottS. N., & GreshamF. M. (1993). Social skills interventions for children. Behavior Modification, 17, 287–313. doi:10.1177/01454455930173004
23.
HoffmanJ. I., & KaplanS. (2002). The incidence of congenital heart disease. Journal of the American College of Cardiology, 39, 1890–1900. doi:10.1016/S0735-1097(02)01886-7
24.
KarsdorpP. A.EveraerdW.KindtM., & MulderB. J. (2007). Psychological and cognitive functioning in children and adolescents with congenital heart disease: A meta-analysis. Journal of Pediatric Psychology, 32, 527–541. doi:10.1093/jpepsy/jsl047
25.
KasperE.GerstenblithG.HefterG.Van AndenE.BrinkerJ.ThiermannD., . . .GottliebS. (2002). A randomized trial of the efficacy of multidisciplinary care in heart failure outpatients at high risk of hospital readmission. Journal of the American College of Cardiology, 39, 471–480. doi:10.1016/S0735-1097(01)01761-2
26.
KerwinM. E. (1999). Empirically supported treatments in pediatric psychology: Severe feeding problems. Journal of Pediatric Psychology, 24, 193–214. doi:10.1093/jpepsy/24.3.193
27.
LawokoS., & SoaresJ. J. F. (2003). Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 12, 655–666. doi:10.1023/A:1025114331419
28.
LimperopoulosC.TworetzkyW.McElhinneyD. B.NewburgerJ. W.BrownD. W.RobertsonR. L.Jr.. . .du PlessisA. J. (2010). Brain volume and metabolism in fetuses with congenital heart disease: Evaluation with quantitative magnetic resonance imaging and spectroscopy. Circulation, 121, 26–33. doi:10.1161/CIRCULATIONAHA.109.865568
29.
MahleW. T. (2001). Neurologic and cognitive outcomes in children with congenital heart disease. Current Opinions in Pediatrics, 13, 482–486. doi:10.1097/00008480-200110000-00016
30.
MarinoB. S.LipkinP. H.NewburgerJ. W.PeacockG.GerdesM.GaynorJ. W., . . .MahleW. T. (2012). Neurodevelopmental outcomes in children with congenital heart disease: Evaluation and management: A scientific statement from the American Heart Association. Circulation, 126, 1143–1172. doi:10.1161/CIR.0b013e318265ee8a
31.
McCuskerC. G.DohertyN. N.MolloyB.CaseyF.RooneyN.MulhollandC., . . .StewartM. (2007). Determinants of neuropsychological and behavioral outcomes in early childhood survivors of congenital heart disease. Archives of Diseases in Childhood, 92, 137–141. doi:10.1136/adc.2005.092320
32.
McCuskerC. G.DohertyN. N.MolloyB.RooneyN.MulhollandC.SandsA., . . .CaseyF. (2012). A randomized controlled trial of interventions to promote adjustment in children with congenital heart disease entering school and their families. Journal of Pediatric Psychology, 37, 1089–1103. doi:10.1093/jpepsy/jss092
33.
McCuskerC.DohertyN.MolloyB.RooneyN.MulhollandC.SandsA., . . .CaseyF. (2010). A controlled trial of early interventions to promote maternal adjustment and development in infants born with severe congenital heart disease. Child: Care, Health and Development, 36, 110–117. doi:10.1111/j.1365-2214.2009.01026.x
34.
McGrailK. (1997). Nutritional considerations for infants and children with congenital heart disease. Topics in Clinical Nutrition, 13, 62–68. doi:10.1097/00008486-199713010-00007
35.
Medoff-CooperB., & RavishankarC. (2013). Nutrition and growth in congenital heart disease: A challenge in children. Current Opinions in Cardiology, 28, 122–129. doi:10.1097/HCO.0b013e32835dd005
36.
ModiB.LangerM.ChingY.ValimC.WaterfordS.IglesiasJ., . . .DugganC. (2008). Improved survival in a multidisciplinary short bowel syndrome program. Journal of Pediatric Surgery, 43, 20–24. doi:10.1016/j.jpedsurg.2007.09.014
37.
MulhernR. K., & ButlerR. W. (2006). Neuropsychological late effects. In BrownR. T. (Ed.), Comprehensive handbook of childhood cancer and sickle cell disease: A biopsychosocial approach (pp. 262–278). New York, NY: Oxford University Press.
38.
OfmanJ.BadamgaravE.HenningK.GanoA.LevanR.KnightK., . . .WeingartenS. (2004). Does disease management improve clinical and economic outcomes in patients with chronic diseases? A systematic review. The American Journal of Medicine, 117, 182–192. doi:10.1016/j.amjmed.2004.03.018
RameyC. T.BryantD. M.WasikB. H.SparlingJ. J.FendtK. H., & LaVangeL. M. (1992). Infant health and development program for low birth weight, premature infants: Program elements, family participation and child intelligence. Pediatrics, 89, 454–465.
41.
SananesR.ManlihotC.KellyE.HornbergerL.WilliamsW.MacGregorD., . . .McCrindleB. (2012). Neurodevelopmental outcomes following open-heart surgery before 3 months of age. The Annals of Thoracic Surgery, 93, 1577–1583. doi:10.1016/j.athoracsur.2012.02.011
42.
ShillingfordA.GlanzmanM.IttenbachR.ClancyR.GaynorW., & WernovskyG. (2008). Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease. Pediatrics, 121, 759–767. doi:10.1542/peds.2007-1066
43.
StephensB. E., & VohrB. R. (2009). Neurodevelopmental outcome of the premature infant. Pediatric Clinics of North America, 56, 631–646. doi:10.1016/j.pcl.2009.03.005
44.
StruemphK.SoodE.BarhightL.ThackerD., & GiddingS. (2013, April). Implementing a psychosocial screening tool in an outpatient cardiology clinic. Poster presented at the National Conference in Pediatric Psychology, New Orleans, LA.
45.
ThommessenM.HeibergA., & KaseB. F. (1992). Feeding problems in children with congenital heart disease: The impact on energy intake and growth outcome. European Journal of Clinical Nutrition, 46, 457–464.
46.
UmanL. S.ChambersC. T.McGrathP. J., & KiselyS. (2008). A systematic review of randomized controlled trials examining psychological interventions for needle-related procedural pain and distress in children and adolescents: An abbreviated Cochrane Review. Journal of Pediatric Psychology, 33, 842–854. doi:10.1093/jpepsy/jsn031
47.
UzarkK., & JonesK. (2003). Parenting stress and children with heart disease. Journal of Pediatric Health Care, 17, 163–168.
48.
WatanabeK.MatsuiM.MatsuzawaJ.TanakaC.NoguchiK.YoshimuraN., . . .GurR. C. (2009). Impaired neuroanatomic development in infants with congenital heart disease. Journal of Thoracic and Cardiovascular Surgery, 137, 146–153. doi:10.1016/j.jtcvs.2008.06.036
49.
WernovskyG. (2006). Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiology in the Young, 16, 92–104. doi:10.1017/S1047951105002398
