Neurodevelopmental Outcomes in Children With Congenital Heart Disease: Evaluation and Management
2012; Lippincott Williams & Wilkins; Volume: 126; Issue: 9 Linguagem: Inglês
10.1161/cir.0b013e318265ee8a
ISSN1524-4539
AutoresBradley S. Marino, Paul H. Lipkin, Jane W. Newburger, Georgina Peacock, Marsha Gerdes, J. William Gaynor, Kathleen Mussatto, Karen Uzark, Caren S. Goldberg, Walter H. Johnson, Jennifer Li, Sabrina E. Smith, David C. Bellinger, William T. Mahle,
Tópico(s)Cardiac Arrhythmias and Treatments
ResumoHomeCirculationVol. 126, No. 9Neurodevelopmental Outcomes in Children With Congenital Heart Disease: Evaluation and Management Free AccessResearch ArticlePDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissions ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toFree AccessResearch ArticlePDF/EPUBNeurodevelopmental Outcomes in Children With Congenital Heart Disease: Evaluation and ManagementA Scientific Statement From the American Heart Association Bradley S. Marino, MD, MPP, MSCE, FAHA, Paul H. Lipkin, MD, Jane W. Newburger, MD, MPH, FAHA, Georgina Peacock, MD, MPH, Marsha Gerdes, PhD, J. William Gaynor, MD, Kathleen A. Mussatto, PhD, RN, Karen Uzark, PhD, CNP, FAHA, Caren S. Goldberg, MD, MS, Walter H. JohnsonJr, MD, Jennifer Li, MD, Sabrina E. Smith, MD, PhD, David C. Bellinger, PhD and William T. Mahle, MD, FAHA Bradley S. MarinoBradley S. Marino , Paul H. LipkinPaul H. Lipkin , Jane W. NewburgerJane W. Newburger , Georgina PeacockGeorgina Peacock , Marsha GerdesMarsha Gerdes , J. William GaynorJ. William Gaynor , Kathleen A. MussattoKathleen A. Mussatto , Karen UzarkKaren Uzark , Caren S. GoldbergCaren S. Goldberg , Walter H. JohnsonJrWalter H. JohnsonJr , Jennifer LiJennifer Li , Sabrina E. SmithSabrina E. Smith , David C. BellingerDavid C. Bellinger and William T. MahleWilliam T. Mahle and on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, and Stroke Council Originally published30 Jul 2012https://doi.org/10.1161/CIR.0b013e318265ee8aCirculation. 2012;126:1143–1172Other version(s) of this articleYou are viewing the most recent version of this article. Previous versions: January 1, 2012: Previous Version 1 AbstractBackground—The goal of this statement was to review the available literature on surveillance, screening, evaluation, and management strategies and put forward a scientific statement that would comprehensively review the literature and create recommendations to optimize neurodevelopmental outcome in the pediatric congenital heart disease (CHD) population.Methods and Results—A writing group appointed by the American Heart Association and American Academy of Pediatrics reviewed the available literature addressing developmental disorder and disability and developmental delay in the CHD population, with specific attention given to surveillance, screening, evaluation, and management strategies. MEDLINE and Google Scholar database searches from 1966 to 2011 were performed for English-language articles cross-referencing CHD with pertinent search terms. The reference lists of identified articles were also searched. The American College of Cardiology/American Heart Association classification of recommendations and levels of evidence for practice guidelines were used. A management algorithm was devised that stratified children with CHD on the basis of established risk factors. For those deemed to be at high risk for developmental disorder or disabilities or for developmental delay, formal, periodic developmental and medical evaluations are recommended. A CHD algorithm for surveillance, screening, evaluation, reevaluation, and management of developmental disorder or disability has been constructed to serve as a supplement to the 2006 American Academy of Pediatrics statement on developmental surveillance and screening. The proposed algorithm is designed to be carried out within the context of the medical home. This scientific statement is meant for medical providers within the medical home who care for patients with CHD.Conclusions—Children with CHD are at increased risk of developmental disorder or disabilities or developmental delay. Periodic developmental surveillance, screening, evaluation, and reevaluation throughout childhood may enhance identification of significant deficits, allowing for appropriate therapies and education to enhance later academic, behavioral, psychosocial, and adaptive functioning.This statement has been approved by the American Academy of Pediatrics.Table of Contents1. Note Regarding Language............11452. Patients With CHD Have Increased Risk for DD ............1145 2.1. CHD Prevalence and Patient Survival ............11452.2. Prevalence of DD in the CHD Population ............11463. Risk Categories and a CHD Algorithm for DD ............1146 3.1. Medical Home Visit of a Patient With CHD ............1147 3.1.1. The Medical Home ............11483.1.2. Medical Home: Individualized Approach ............11483.1.3. Medical Home: Collaboration ............11483.1.4. Medical Home: Comprehensive Record ............11483.2. Risk Stratification ............1148 3.2.1. Neonates or Infants Requiring Open Heart Surgery (Cyanotic and Acyanotic Types) ............11493.2.2. Children With Other Cyanotic Heart Lesions Not Requiring Open Heart Surgery During the Neonatal or Infant Period ............11493.2.3. CHD With Comorbidities ............1149 3.2.3.1. Prematurity and/or Developmental Delay Recognized in Infancy ............11493.2.3.2. Genetic Abnormality or Syndrome Associated With DD ............11493.2.3.3. Mechanical Support or Heart Transplantation ............11523.2.3.4. Cardiopulmonary Resuscitation ............11523.2.3.5. Prolonged Hospitalization ............11523.2.3.6. Perioperative Seizures Related to CHD Surgery ............11523.2.3.7. Significant Abnormalities on Neuroimaging or Microcephaly............11523.3. Does the Patient With CHD Meet the Criteria for the Neurodevelopmental High-Risk Category? ............1152 3.3.1. Perform Surveillance ............1153 3.3.1.1. Elicit and Attend to the Parents' Concerns ............11533.3.1.2. Maintain a Developmental History ............11533.3.1.3. Make Accurate and Informed Observations of the Child ............11533.3.1.4. Identify the Presence of Risk and Protective Factors ............11533.3.1.5. Document the Process and Findings ............11533.3.2. Screening Versus Evaluation ............11533.3.3. Administer Screening Tool ............1153 3.3.3.1. Behavioral and Psychological Issues ............11553.3.3.2. Autism Spectrum Disorders ............11563.3.3.3. Fine and Gross Motor Skills ............11563.4. Make Referrals for Early Intervention and Formal Developmental and Medical Evaluation ............11573.5. Formal Developmental and Medical Evaluation ............1157 3.5.1. Individualized Approach ............11573.5.2. Genetic Evaluation ............1157 3.5.2.1. Early Identification ............11573.5.2.2. Latent and Subtle Phenotypes ............11583.5.2.3. Specialized or Advanced Analyses ............11583.5.3. Structural Brain Imaging ............11583.5.4. Age-specific Neurodevelopmental Evaluation: Domains and Instruments ............1159 3.5.4.1. Infant/Toddler/Preschooler ............1159 3.5.4.1.1. Infant: Birth to 1 Year of Age ............11593.5.4.1.2. Toddlers and Preschoolers: 1 to 5 Years of Age ............11593.5.4.2. Child/Adolescent ............11593.6. Is a Developmental Disorder Identified? ............11603.7. Schedule Periodic Reevaluation in Patients With CHD Deemed High Risk for DD ............11603.8. Schedule Intervention and Supportive Therapies ............11603.9. Monitor Progress With Continued Periodic Reevaluation in Patients With CHD With Identified DD ............11614. Management of DD in School-Aged Children and Adolescents With CHD ............1161 4.1. School-Aged Child Developmental, Academic, and Behavioral Issues ............1161 4.1.1. Attention Deficit and ADHD ............11614.2. Adolescent Psychosocial, Behavioral, and Social Issues ............1161 4.2.1. Psychosocial Adjustment ............11624.2.2. Behavior ............11624.3. Adaptive Functioning ............1162 4.3.1. Activities of Daily Living ............11624.3.2. Social and Communication Skills ............11624.3.3. Community Living Skills ............11635. Transition to Adulthood ............1163 5.1. Psychiatric Disorders and Self-Management ............11635.2. Impact of CHD on QOL During Transition to Adulthood ............11636. Impact of DD on QOL for Children With CHD ............11637. Conclusions ............11648. Recommendations ............1164 Acknowledgments ............1164Appendix. Abbreviations Used in This Scientific Statement ............1164Writing Group Disclosures ............1165Reviewer Disclosures ............1165References............1166Over the past several decades, new surgical techniques and advances in cardiopulmonary bypass (CPB), intensive care, cardiac catheterization, noninvasive imaging, and medical therapies have significantly lowered mortality rates for children and adolescents with complex congenital heart disease (CHD).1,2 Survivors are at risk for neurodevelopmental morbidity caused by both biological and environmental risk factors. Biological risk factors include underlying syndromes or genetic/developmental disorders, the circulatory abnormalities specific to the heart defect, and the medical and surgical therapies required. Biological risk factors are modified by environmental risk and protective factors at home, school, and work. With increased survival rates, the focus of clinical research in the pediatric cardiac population has paralleled this population shift and transitioned from short-term surgical survival to the assessment of long-term morbidity. Among pediatric patients with complex CHD, there is a distinctive pattern of neurodevelopmental and behavioral impairment characterized by mild cognitive impairment, impaired social interaction, and impairments in core communication skills, including pragmatic language, as well as inattention, impulsive behavior, and impaired executive function.3–5 Many school-aged survivors of infant cardiac surgery require habilitative services, including tutoring, special education, and physical, occupational, and speech therapy.6,7 The neurodevelopmental and psychosocial morbidity related to CHD and its treatment often limit ultimate educational achievements, employability, lifelong earnings, insurability, and quality of life (QOL) for many patients.7–14 A significant proportion of patients with complex CHD may need specialized services into adulthood.12,13 Incorporation of a new stratification method and clinical algorithm may result in increased surveillance, screening, evaluation, diagnosis, and management of developmental disorders or disabilities (DDs) in the complex CHD population and consequent improvement in neurodevelopmental and behavioral outcomes in this high-risk population. With early identification of DDs and developmental delays, children have the best chance to reach their full potential.Despite the well-documented presence of DD in the CHD population,5,15–17 no practice guidelines for the evaluation and management of these impairments currently exist. Because the developmental surveillance and screening regimen currently used during routine pediatric care is not designed to prioritize children at known risk for DD, CHD patients may be delayed in referral for evaluation and early intervention. In addition, uncertainty about which care providers should be responsible for overseeing the management of these DDs can also hinder optimal and efficient care. This statement will review the factors underlying the increased risk for DD in the CHD population, recommend a CHD algorithm for DD that incorporates risk stratification, review age-based management of CHD patients, and discuss the impact of DD on QOL for the CHD population. Through review and synthesis of the current body of knowledge, the present statement seeks to provide a new framework for the surveillance, screening, evaluation, and management of DDs in the pediatric CHD population. Recommendations are evidence based and derived from published data. MEDLINE and Google Scholar database searches from 1966 to 2011 were conducted for English-language articles cross-referencing CHD with pertinent search terms (ie, attention deficit hyperactivity disorder, autism spectrum disorders, brain injury, behavioral issues, cardiopulmonary resuscitation, developmental disorder, developmental disability, developmental delay, developmental screening, fine and gross motor abnormalities, genetic disorder or syndrome, heart transplantation, mechanical support, microcephaly, neurodevelopment, neurodevelopmental outcome, periventricular leukomalacia, prematurity, prolonged hospitalization, psychological issues, psychosocial abnormalities, quality of life, seizures, stroke, transition, and adult CHD). The reference lists of identified articles were also searched. Published abstracts from major pediatric scientific meetings in 2010 and 2011 were also reviewed. Classification of recommendations and level of evidence were assigned to each recommendation per the manual for American College of Cardiology (ACC)/American Heart Association (AHA) guideline writing committees ("Methodologies and Policies From the ACC/AHA Task Force on Practice Guidelines," section 4: writing recommendations). The ACC/AHA guidelines grading schema based on level of evidence and class of recommendation (Table 1) were used.18 The level of evidence classification combines an objective description of the existence and the types of studies that support the recommendation and expert consensus, according to 1 of the following 3 categories:Table 1. Applying Classification of Recommendations and Level of EvidenceTable 1. Applying Classification of Recommendations and Level of EvidenceA recommendation with Level of Evidence B or C does not imply that the recommendation is weak. Many important clinical questions addressed in the guidelines do not lend themselves to clinical trials. Although randomized trials are unavailable, there may be a very clear clinical consensus that a particular test or therapy is useful or effective.*Data available from clinical trials or registries about the usefulness/efficacy in different subpopulations, such as sex, age, history of diabetes, history of prior myocardial infarction, history of heart failure, and prior aspirin use.†For comparative effectiveness recommendations (Class I and IIa; Level of Evidence A and B only), studies that support the use of comparator verbs should involve direct comparisons of the treatments or strategies being evaluated.Level of Evidence A: Recommendation based on evidence from multiple randomized trials or meta-analyses.Level of Evidence B: Recommendation based on evidence from a single randomized trial or nonrandomized studies.Level of Evidence C: Recommendation based on expert opinion, case studies, or standards of care.1. Note Regarding LanguageFor consistency, this statement uses terminology in accord with the 2006 American Academy of Pediatrics (AAP) policy statement on developmental surveillance and screening policy for the general pediatric population.19 Developmental "disorder" and "disability" (DD) are used equivalently within the context of this document and refer to the existence of a neurocognitive or neurobehavioral limitation or abnormality, psychosocial maladjustment, or physical limitation.19 In contrast, "development delay" is used to denote that a child's developmental maturation or "mental and/or physical skills are not consistent with the typical time frame."19 Surveillance, screening, and evaluation have distinct meanings and are defined as follows: (1) Surveillance—"the process of recognizing children who may be at risk for developmental delay"; (2) screening—"the use of standardized tools to identify and refine the risk" recognized from surveillance; and (3) evaluation—"a complex process aimed at identifying specific developmental disorders or disabilities that are affecting a child."19 The term medical home is per the 2002, 2005, and 2006 AAP policy statements and is "the optimal setting for family-centered care coordination."19–212. Patients With CHD Have Increased Risk for DD2.1. CHD Prevalence and Patient SurvivalThe prevalence of CHD is estimated to be 9 per 1000 live births,22,23 with 3 per 1000 requiring catheter-based or surgical intervention early in life.24 An estimated 85% of children diagnosed with CHD will survive into adulthood,25 yielding between 1.0 and 2.9 million adult survivors with CHD.26 Survival rates vary by disease complexity: Long-term survival (>20 years) rates for children are estimated to be 95% for simple CHD (eg, isolated semilunar valve disease, atrial and ventricular septal defects), 90% for moderate-severity CHD (eg, coarctation of the aorta, atrioventricular septal defect, ventricular septal defect with comorbidities, tetralogy of Fallot [TOF]), and 80% for CHD of great complexity (eg, single ventricle, truncus arteriosus, complex transposition of the great arteries [TGA]).27 Although specific types of complex CHD (eg, hypoplastic left heart syndrome) may have lower survival rates, overall survival rates have increased for even the most complex palliated defects.1 For those with complex CHD, adults are now believed to outnumber children.28,292.2. Prevalence of DD in the CHD PopulationThe prevalence and severity of DD and developmental delay increases with the complexity of CHD30 and is associated with several genetic syndromes31–38 (Figure 1; Table 2). Recent studies have shown that children with complex CHD have a significantly increased risk for DD in the areas of intelligence,15–17,47,48 academic achievement,5,16,17,48,49 language (development, expressive and receptive),5,15,16,48,50,51 visual construction and perception,5,16,49,52–55 attention,5,6,16,49,51,56 executive functioning,51,57 fine motor skills,15,48,49,51,52 gross motor skills,5,15,48,50,58,59 and psychosocial maladjustment (internalizing and externalizing problems).60–65Download figureDownload PowerPointFigure 1. Prevalence of neurodevelopmental impairment in the population with congenital heart disease (CHD). Schematic representation of developmental disorders or disabilities (DDs) in children with CHD. Children with milder forms of CHD (eg, atrial septal defect or ventricular septal defect, isolated semilunar valve disease) have a low incidence of DDs. Increasingly complex forms of moderate 2-ventricle CHD (eg, coarctation of the aorta, complex semilunar valve disease, atrioventricular septal defect, ventricular septal defect with comorbidities, tetralogy of Fallot, total anomalous pulmonary venous connection) are associated with increasing numbers of children with DDs, and in severe 2-ventricle or palliated single-ventricle CHD (eg, transposition of the great arteries, truncus arteriosus, interrupted aortic arch, tetralogy of Fallot/pulmonary atresia with major aortopulmonary collateral arteries, pulmonary atresia with intact ventricular septum, hypoplastic left heart syndrome, tricuspid atresia), only the minority of children are completely normal in all respects. CHD associated with genetic disorders or syndromes (eg, Down syndrome, 22q11 deletion, Noonan syndrome, Williams syndrome) and multiple congenital anomalies (eg, CHARGE syndrome) are nearly always associated with DDs. Adapted from Wernovsky39 with permission of the publisher. Copyright © 2006, Cambridge University Press.Table 2. Common Genetic Syndromes Associated With CHD and Developmental Disorder or DisabilitySyndromeCommon Genetic Cause*% With CHDCommon Lesions*Developmental Disorder or DisabilityAlagilleJAG1 gene mutation or deletion85PPS, TOFIQ varies between normal and moderate intellectual disabilityCHARGECHD7 gene mutation or deletion>50TOF, IAA, TA, PDA, VSD, ASDIntellectual disability in almost all cases38DownTrisomy 2140AVSD, VSD, TOF, PDAMedian IQ 50PVS, ASD, HCMMean IQ 8442–44TurnerMonosomy of chromosome X30BAV, CoAMean IQ 9035,36VACTERLUnknown75VSD, ASD, PDA, TGAMajority with normal IQ but majority with DD caused by multiple congenital anomalies; malformationsWilliamsMicrodeletion 7q11.2360SVAS, PPSMean IQ 5644a; visual-spatial impairments45; hypotonia/hypertonia46CHD indicates congenital heart disease; PPS, peripheral pulmonary stenosis; TOF, tetralogy of Fallot; IQ, intelligence quotient; CHARGE, Coloboma of the eye, Central nervous system anomalies, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary defects, Ear anomalies and/or deafness; IAA, interrupted aortic arch; TA, truncus arteriosus; PDA, patent ductus arteriosus; VSD, ventricular septal defect; ASD, atrial septal defect; AVSD, atrioventricular septal defect; ADHD, attention deficit hyperactivity disorder; HLHS, hypoplastic left heart syndrome; PVS, pulmonary valve stenosis; HCM, hypertrophic cardiomyopathy; BAV, bicuspid aortic valve; CoA, coarctation of aorta; VACTERL, Vertebral anomalies, Anal atresia, Cardiovascular anomalies, Tracheoesophageal fistula, Esophageal atresia, Renal/kidney and/or Radial anomaly, Limb defects; TGA, transposition of the great arteries; DD, developmental disorder or disability; and SVAS, supravalvar aortic stenosis.*Common genetic causes and common lesions for syndromes are available from OMIM (http://www.ncbi.nlm.nih.gov/omim; accessed October 2011).3. Risk Categories and a CHD Algorithm for DDGiven the prevalence of DD in specific subpopulations of complex CHD and in patients with CHD and certain comorbidities, this statement proposes specific low- and high-risk groups (Table 3) for DD to facilitate early evaluation, diagnosis, and intervention that may improve developmental outcome. In addition, a CHD algorithm for surveillance, screening, evaluation and management of DD was developed (Figure 2A and 2B) to complement the general algorithm from the AAP 2006 policy statement entitled, "Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening."19Table 3. Categories of Pediatric CHD Patients at High Risk for Developmental Disorders or Disabilities1. Neonates or infants requiring open heart surgery (cyanotic and acyanotic types), for example, HLHS, IAA, PA/IVS, TA, TAPVC, TGA, TOF, tricuspid atresia.2. Children with other cyanotic heart lesions not requiring open heart surgery during the neonatal or infant period, for example, TOF with PA and MAPCA(s), TOF with shunt without use of CPB, Ebstein anomaly.3. Any combination of CHD and the following comorbidities: 3.1. Prematurity ( 2-wk in the hospital) 3.8. Perioperative seizures related to CHD surgery 3.9. Significant abnormalities on neuroimaging or microcephaly*4. Other conditions determined at the discretion of the medical home providersCHD indicates congenital heart disease; HLHS, hypoplastic left heart syndrome; IAA, interrupted aortic arch; PA/IVS, pulmonary atresia with intact ventricular septum; TA, truncus arteriosus; TAPVC, total anomalous pulmonary venous connection; TGA, transposition of the great arteries; TOF, tetralogy of Fallot; PA, pulmonary atresia; MAPCA, major aortopulmonary collateral arteries; CPB, cardiopulmonary bypass; DD, developmental disorder or disability; ECMO, extracorporeal membrane oxygenation; VAD, ventricular assist device; and LOS, length of stay.*Normative data by sex, including percentiles and z scores, are available from the World Health Organization (www.who.int/childgrowth; accessed February 2010).Download figureDownload PowerPointDownload figureDownload figureDownload PowerPointFigure 2. A, Congenital heart disease (CHD) algorithm for surveillance, screening, evaluation, and management of developmental disorders and disabilities. ND indicates neurodevelopmental; AAP, American Academy of Pediatrics. B, Description of congenital heart disease algorithm for surveillance, screening, evaluation, and management of developmental disorders and disabilities. AAP indicates American Academy of Pediatrics, CHD, congential heart disease; DD, developmental disorder or disability.3.1. Medical Home Visit of a Patient With CHD3.1.1. The Medical HomeMuch of the focus of the pediatric cardiology and cardiac surgery community centers on optimizing high-acuity, hospital-based care for children with CHD; however, important long-term care issues for this population include neurodevelopmental surveillance, screening, evaluation, and management. To achieve the best care for this population, a coordinated care model is needed. The US Department of Health and Human Services' Healthy People 2010 goals and objectives state that "all children with special health care needs will receive regular ongoing comprehensive care within a medical home,"19–21 and multiple federal programs require that all children have access to an ongoing source of health care.663.1.2. Medical Home: Individualized ApproachThe recommendations provided within this statement should be used to guide development of individualized follow-up plans for each patient on the basis of that patient's particular risk for late complications. A number of critical factors are likely to influence the approach for supportive interventions and therapies for children with CHD who have ongoing developmental concerns. For example, proximity to highly specialized pediatric care or familial work constraints that necessitate "after-hours" services may mean that 2 children with similar developmental concerns would need to receive support services using 2 separate, tailored approaches. Individualized plans should be developed through shared partnership and comanagement, which may include the primary care provider (eg, general pediatrician, family practitioner, nurse practitioner) and/or subspecialists (eg, pediatric cardiologist, pediatric neurologist, developmental pediatrician, psychologist, or other pediatric developmental specialist), the child, and the family, to coordinate and implement a specific care plan as an organized team.3.1.3. Medical Home: CollaborationAn important component of the medical home is the acknowledgement of the need for consultation and appropriate referral to pediatric medical subspecialists and surgical specialists. Recently, focused neurodevelopmental follow-up clinics for children with complex CHD have been created at several pediatric cardiac centers in North America. These clinics have tremendous expertise in the identification of DDs and developmental delay through multidisciplinary teams, which may include a developmental pediatrician, pediatric psychologist, and neurologist, as well as important consultative services such as nutrition, special education or school intervention, speech and language therapy, and physical or occupational therapy. Children with CHD lesions of moderate or great complexity require lifelong care, initially by a pediatric cardiologist and later by an adult CHD specialist or cardiologist familiar with CHD.13 It is therefore important that the primary, subspecialty, and surgical pediatric medical care providers collaborate to establish shared management plans in partnership with the child and family and to formulate a clear articulation of each other's role. Medical home providers should also interact with early intervention programs, schools, early childhood education, child care programs, and other public and private community agencies to be certain that the special needs of the child and family are addressed through the medical home.3.1.4. Medical Home: Comprehensive RecordOne of the other key elements of the medical home is the maintenance of an accessible, comprehensive, central record that contains all pertinent information about the child. It is incumbent on the pediatric cardiologist, cardiothoracic surgeon, hospitalist, and other health professionals involved in the acute care of a child with CHD to provide a comprehensive report of hospital-based care. The record should include relevant neuroimaging results, genetic testing, speech and feeding evaluations, and a projected plan of surgical care so that the medical home practitioners may better plan future care. This record should also include relevant educational records whenever possible. In addition, it is recommended that the primary care physician caring for the child with CHD within the medical home also maintain a comprehensive outpatient record (with notes on surveillance, screening and evaluation results, therapeutic and educational services, feeding issues, growth parameters, and immunizations).Because many care centers are either using or transitioning to electronic health records, this format is recommended to facilitate the maintenance and accessibility of the comprehensive record. Although there are no standard formats for the electronic health record, accessibility and portability are critically important. This is especially important for adolescent and adult CHD patients, who will need to take their information with them as they transition through various medical providers during their adult years.3.2. Risk StratificationInclusion of a risk-stratification step is a deviation from the original algorithm in the 2006 AAP statement on developmental surveillance and screening for the general pediatric population and classifies patients with CHD into low- and high-risk categories for DD. The incorporation of a risk-stratification schema specific to the CHD population is intended to strengthen surveillance and screenin
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