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Neurodevelopmental Outcomes in Children With Childrens...Heart Disease: Evaluation and Management ... Council on Cardiovascular Nursing, ... Children With Other Cyanotic Heart Lesions

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  • Jr, Jennifer Li, Sabrina E. Smith, David C. Bellinger and William T. MahleWilliam Gaynor, Kathleen A. Mussatto, Karen Uzark, Caren S. Goldberg, Walter H. Johnson, Bradley S. Marino, Paul H. Lipkin, Jane W. Newburger, Georgina Peacock, Marsha Gerdes, J.

    and Management : A Scientific Statement From the American Heart AssociationNeurodevelopmental Outcomes in Children With Congenital Heart Disease: Evaluation

    Print ISSN: 0009-7322. Online ISSN: 1524-4539 Copyright 2012 American Heart Association, Inc. All rights reserved.

    is published by the American Heart Association, 7272 Greenville Avenue, Dallas, TX 75231Circulation doi: 10.1161/CIR.0b013e318265ee8a

    2012;126:1143-1172; originally published online July 30, 2012;Circulation. Wide Web at:

    The online version of this article, along with updated information and services, is located on the

    is online at: Circulation Information about subscribing to Subscriptions: Information about reprints can be found online at: Reprints:

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    at CHILDRENS HOSP on September 21, 2012 from

  • AHA Scientific Statement

    Neurodevelopmental Outcomes in Children With CongenitalHeart Disease: Evaluation and Management

    A Scientific Statement From the American Heart AssociationThis statement has been approved by the American Academy of Pediatrics.

    Bradley S. Marino, MD, MPP, MSCE, FAHA, Co-Chair; 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. Johnson, Jr, MD; Jennifer Li, MD;Sabrina E. Smith, MD, PhD; David C. Bellinger, PhD; William T. Mahle, MD, FAHA, Co-Chair; on

    behalf of the American Heart Association Congenital Heart Defects Committee of the Council onCardiovascular Disease in the Young, Council on Cardiovascular Nursing, and Stroke Council

    BackgroundThe goal of this statement was to review the available literature on surveillance, screening, evaluation, andmanagement strategies and put forward a scientific statement that would comprehensively review the literature and createrecommendations to optimize neurodevelopmental outcome in the pediatric congenital heart disease (CHD) population.

    Methods and ResultsA writing group appointed by the American Heart Association and American Academy ofPediatrics reviewed the available literature addressing developmental disorder and disability and developmental delayin 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 articlescross-referencing CHD with pertinent search terms. The reference lists of identified articles were also searched. TheAmerican College of Cardiology/American Heart Association classification of recommendations and levels of evidencefor practice guidelines were used. A management algorithm was devised that stratified children with CHD on the basisof established risk factors. For those deemed to be at high risk for developmental disorder or disabilities or fordevelopmental delay, formal, periodic developmental and medical evaluations are recommended. A CHD algorithm forsurveillance, screening, evaluation, reevaluation, and management of developmental disorder or disability has beenconstructed to serve as a supplement to the 2006 American Academy of Pediatrics statement on developmentalsurveillance 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.

    ConclusionsChildren with CHD are at increased risk of developmental disorder or disabilities or developmental delay.Periodic developmental surveillance, screening, evaluation, and reevaluation throughout childhood may enhanceidentification of significant deficits, allowing for appropriate therapies and education to enhance later academic,behavioral, psychosocial, and adaptive functioning. (Circulation. 2012;126:1143-1172.)

    Key Words: AHA Scientific Statements cardiopulmonary bypass heart defects, congenital heart diseases,follow-up studies, brain pediatrics

    This statement has not been formally disseminated by the Centers for Disease Control and Prevention/the Agency for Toxic Substances and DiseaseRegistry. It does not represent and should not be construed to represent any agency determination or policy.

    The American Heart Association makes every effort to avoid any actual or potential conflicts of interest that may arise as a result of an outsiderelationship or a personal, professional, or business interest of a member of the writing panel. Specifically, all members of the writing group are requiredto complete and submit a Disclosure Questionnaire showing all such relationships that might be perceived as real or potential conflicts of interest.

    This statement was approved by the American Heart Association Science Advisory and Coordinating Committee on April 27, 2012. A copy of thedocument is available at by selecting either the By Topic link or the By Publication Date link. To purchaseadditional reprints, call 843-216-2533 or e-mail [email protected]

    The American Heart Association requests that this document be cited as follows: Marino BS, Lipkin PH, Newburger JW, Peacock G, Gerdes M, GaynorJW, Mussatto KA, Uzark K, Goldberg CS, Johnson WH Jr, Li J, Smith SE, Bellinger DC, Mahle WT; on behalf of the American Heart AssociationCongenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, and Stroke Council.Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American HeartAssociation. Circulation. 2012;126:11431172.

    Expert peer review of AHA Scientific Statements is conducted by the AHA Office of Science Operations. For more on AHA statements and guidelinesdevelopment, visit and select the Policies and Development link.

    Permissions: Multiple copies, modification, alteration, enhancement, and/or distribution of this document are not permitted without the expresspermission of the American Heart Association. Instructions for obtaining permission are located at A link to the Copyright Permissions Request Form appears on the right side of the page.

    2012 American Heart Association, Inc.

    Circulation is available at DOI: 10.1161/CIR.0b013e318265ee8a

    1143 at CHILDRENS HOSP on September 21, 2012 from

  • Table of Contents

    1. 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 . . . .1146

    3. Risk Categories and a CHD Algorithm for DD . . . .11463.1. 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 . . .1148

    3.2. Risk Stratification . . . . . . . . . . . . . . . . . . . . . .11483.2.1. 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 Duringthe Neonatal or Infant Period . . . . . . . . . . .1149

    3.2.3. CHD With Comorbidities . . . . . . . . . . .11493.2.3.1. 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? . . . .11523.3.1. Perform Surveillance . . . . . . . . . . . . . . .1153 Elicit and Attend to the ParentsConcerns . . . . . . .

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