Jennifer K. Peterson, Shanelle Clarke, Bruce D. Gelb, Nadine A. Kasparian, Vanna Kazazian, Karyn Pieciak, Nancy A. Pike, Shaun P. Setty, Melissa K. Uveges, Nancy A. Rudd, the American Heart Association Pediatric Cardiovascular Nursing Committee of the Council on Cardiovascular and Stroke Nursing; Council on Clinical Cardiology; Council on Genomic and Precision Medicine; and Council on Cardiovascular Radiology and Intervention
Johns Hopkins University School of Nursing. Children’s Hospital of Wisconsin. Children’s Healthcare Atlanta and Emory University. Icahn School of Medicine at Mount Sinai. Cincinnati Children’s Hospital Medical Center. SickKids Foundation Toronto. Children’s Hospital of Philadelphia. University of California Los Angeles School of Nursing. Miller Children’s Hospital and Long Beach Memorial Hospital. Boston College School of Nursing.
United States and Canada
Journal of the American Medical Association
J Am Med Assoc 2024;
DOI: 10.1161/JAHA.124.036214
Abstract
Due to improvements in recognition and management of their multisystem disease, the long-term survival of infants, children, and adolescents with trisomy 21 and congenital heart disease now matches children with congenital heart disease and no genetic condition in many scenarios. Although this improved survival is a triumph, individuals with trisomy 21 and congenital heart disease have unique and complex care needs in the domains of physical, developmental, and psychosocial health, which affect functional status and quality of life. Pulmonary hypertension and single ventricle heart disease are 2 known cardiovascular conditions that reduce life expectancy in individuals with trisomy 21. Multisystem involvement with respiratory, endocrine, gastrointestinal, hematological, neurological, and sensory systems can interact with cardiovascular health concerns to amplify adverse effects. Neurodevelopmental, psychological, and functional challenges can also affect quality of life. A highly coordinated interdisciplinary care team model, or medical home, can help address these complex and interactive conditions from infancy through the transition to adult care settings. The purpose of this Scientific Statement is to identify ongoing cardiovascular and multisystem, developmental, and psychosocial health concerns for children with trisomy 21 and congenital heart disease from birth through adolescence and to provide a framework for monitoring and management to optimize quality of life and functional status.
Category
Class I. Pulmonary Hypertension Associated with Congenital Cardiovascular Disease
Class III. Pulmonary Hypertension Associated with Airway Disease, Apnea or Hypoventilation
Genetic Factors Associated with Pulmonary Vascular Disease
Consensus Guidelines for Pulmonary Vascular Disease
Age Focus: Pediatric Pulmonary Vascular Disease
Fresh or Filed Publication: Fresh (PHresh). Less than 1-2 years since publication
Article Access
Free PDF File or Full Text Article Available Through PubMed or DOI: Yes