Public health science agenda for congenital heart defects: report from a Centers for Disease Control and Prevention experts meeting

Matthew E Oster, Tiffany Riehle-Colarusso, Regina M Simeone, Michelle Gurvitz, Jonathan R Kaltman, Michael McConnell, Geoffrey L Rosenthal, Margaret A Honein, Matthew E Oster, Tiffany Riehle-Colarusso, Regina M Simeone, Michelle Gurvitz, Jonathan R Kaltman, Michael McConnell, Geoffrey L Rosenthal, Margaret A Honein

No abstract available

Keywords: congenital; epidemiology; heart defects; population; prevention; risk factors.

Figures

Figure 1.
Figure 1.
Public health cycle for congenital heart defects (CHDs).

References

    1. Reller MD, Strickland MJ, Riehle‐Colarusso T, Mahle WT, Correa A. Prevalence of congenital heart defects in metropolitan Atlanta, 1998–2005. J Pediatr. 2008; 153:807-813
    1. Departments of Labor, Health, and Human Services, and Education and Related Agencies Appropriations Act, 2012 Calendar No. 178 (S 1599). In: 112th Congress 1st Session (2011–2012). 2012
    1. Connor JA, Gauvreau K, Jenkins KJ. Factors associated with increased resource utilization for congenital heart disease. Pediatrics. 2005; 116:689-695
    1. Jenkins KJ, Correa A, Feinstein JA, Botto L, Britt AE, Daniels SR, Elixson M, Warnes CA, Webb CLAmerican Heart Association Council on Cardiovascular Disease in the Young Noninherited risk factors and congenital cardiovascular defects: current knowledge: a scientific statement from the American Heart Association Council on Cardiovascular Disease in the Young. Circulation. 2007; 115:2995-3014
    1. Marino BS, Lipkin PH, Newburger JW, Peacock G, Gerdes M, Gaynor JW, Mussatto KA, Uzark K, Goldberg CS, Johnson WH, Jr, Li J, Smith SE, Bellinger DC, Mahle WTAmerican Heart Association Congenital 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 Heart Association. Circulation. 2012; 126:1143-1172
    1. Williams RG, Pearson GD, Barst RJ, Child JS, Del Nido P, Gersony WM, Kuehl KS, Landzberg MJ, Myerson M, Neish SR, Sahn DJ, Verstappen A, Warnes CA, Webb CLNational Heart Lung and Blood Institute Working Group on Research in Adult Congenital Heart Disease Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease. J Am Coll Cardiol. 2006; 47:701-707
    1. Last JM. Public Health and Human Ecology. 1987Norwalk, CT: Appleton & Lange
    1. Teutsch SM, Churchill RE. (eds.). In: Teutsch SM, Churchill RE. (eds.). Principles and Practice of Public Health Surveillance. 1994New York: Oxford UP
    1. Parker SE, Mai CT, Canfield MA, Rickard R, Wang Y, Meyer RE, Anderson P, Mason CA, Collins JS, Kirby RS, Correa ANBDPN Updated National Birth Prevalence estimates for selected birth defects in the United States, 2004–2006. Birth Defects Res A Clin Mol Teratol. 2010; 88:1008-1016
    1. Copeland G, Feldkamp M, Beres LM, Mai CT, Hinton CF, Glidewell J. Newborn screening for critical congenital heart disease: potential roles of birth defects surveillance programs—United States, 2010–2011. MMWR Morb Mortal Wkly Rep. 2012; 61:849-853
    1. NBDPN Major birth defects data from population‐based birth defects surveillance programs in the United States, 2005–2009. Birth Defects Res A Clin Mol Teratol. 2012; 94:S1-S169
    1. Shin M, Besser LM, Siffel C, Kucik JE, Shaw GM, Lu C, Correa ACAMPSC Prevalence of spina bifida among children and adolescents in 10 regions in the United States. Pediatrics. 2010; 126:274-279
    1. Kucik JE, Shin M, Siffel C, Marengo L, Correa ACAMPSC Trends in survival among children with down syndrome in 10 regions of the United States. Pediatrics. 2013; 131:E27-E36
    1. Salemi JL, Tanner JP, Kennedy S, Block S, Bailey M, Correia JA, Watkins SM, Kirby RS. A comparison of two surveillance strategies for selected birth defects in Florida. Public Health Rep. 2012; 127:391-400
    1. Mathews KD, Cunniff C, Kantamneni JR, Ciafaloni E, Miller T, Matthews D, Cwik V, Druschel C, Miller L, Meaney FJ, Sladky J, Romitti PA. Muscular dystrophy surveillance tracking and research network (MD STARnet): case definition in surveillance for childhood‐onset Duchenne/Becker muscular dystrophy. J Child Neurol. 2010; 25:1098-1102
    1. Hoots WK. The registry and surveillance in hemoglobinopathies: improving the lives of individuals with hemoglobinopathies. Am J Prev Med. 2010; 38:S510-S511
    1. Jensen PB, Jensen LJ, Brunak S. Mining electronic health records: towards better research applications and clinical care. Nat Rev Genet. 2012; 13:395-405
    1. Kulich M, Rosenfeld M, Goss CH, Wilmott R. Improved survival among young patients with cystic fibrosis. J Pediatr. 2003; 142:631-636
    1. Marelli AJ, Mackie AS, Ionescu‐Ittu R, Rahme E, Pilote L. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation. 2007; 115:163-172
    1. Marelli A, Gilboa S, Devine O, Kucik J, Lonescu‐Lttu R, Oster M, Riehle‐Colarusso T, Correa A, Jenkins K. Estimating the congenital heart disease population in the United States in 2010—what are the numbers? J Am Coll Cardiol. 2012; 59:E787-E787
    1. Pierpont ME, Basson CT, Benson DW, Jr, Gelb BD, Giglia TM, Goldmuntz E, Mcgee G, Sable CA, Srivastava D, Webb CLAmerican Heart Association Congenital Cardiac Defects Committee Council on Cardiovascular Disease in the Young Genetic basis for congenital heart defects: current knowledge: a scientific statement from the American Heart Association Congenital Cardiac Defects Committee, Council on Cardiovascular Disease in the Young. Circulation. 2007; 115:3015-3038
    1. Correa A, Gilboa SM, Besser LM, Botto LD, Moore CA, Hobbs CA, Cleves MA, Riehle‐Colarusso TJ, Waller DK, Reece EA. Diabetes mellitus and birth defects. Am J Obstet Gynecol. 2008; 199:237.
    1. Gilboa SM, Correa A, Botto LD, Rasmussen SA, Waller DK, Hobbs CA, Cleves MA, Riehle‐Colarusso TJNBDPS Association between prepregnancy body mass index and congenital heart defects. Am J Obstet Gynecol. 2010; 202:51.
    1. Oster ME, Riehle‐Colarusso T, Correa A. An update on cardiovascular malformations in congenital rubella syndrome. Birth Defects Res A Clin Mol Teratol. 2010; 88:1-8
    1. Broussard CS, Rasmussen SA, Reefhuis J, Friedman JM, Jann MW, Riehle‐Colarusso T, Honein MANBDPS Maternal treatment with opioid analgesics and risk for birth defects. Am J Obstet Gynecol. 2011; 204:314.
    1. Alverson CJ, Strickland MJ, Gilboa SM, Correa A. Maternal smoking and congenital heart defects in the Baltimore‐Washington Infant Study. Pediatrics. 2011; 127:E647-E653
    1. Hartman RJ, Rasmussen SA, Botto LD, Riehle‐Colarusso T, Martin CL, Cragan JD, Shin M, Correa A. The contribution of chromosomal abnormalities to congenital heart defects: a population‐based study. Pediatr Cardiol. 2011; 32:1147-1157
    1. Hamner HC, Tinker SC, Flores AL, Mulinare J, Weakland AP, Dowling NF. Modeling fortification of corn masa flour with folic acid and the potential impact on Mexican‐American women with lower acculturation. Public Health Nutr. 2013; 16:912-921
    1. Warnes CA, Liberthson R, Danielson GK, Dore A, Harris L, Hoffman JI, Somerville J, Williams RG, Webb GD. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol. 2001; 37:1170-1175
    1. Ferencz C, Rubin JD, Mccarter RJ, Brenner JI, Neill CA, Perry LW, Hepner SI, Downing JW. Congenital heart disease: prevalence at livebirth. The Baltimore‐Washington Infant Study. Am J Epidemiol. 1985; 121:31-36
    1. Report of the New England Regional Infant Cardiac Program. Pediatrics. 1980; 65:375-461
    1. Nadas AS. Report from the joint study on the natural history of congenital heart defects. IV. Clinical Course. Circulation. 1977; 56Suppl 1:I36-38
    1. Hayes CJ, Gersony WM, Driscoll DJ, Keane JF, Kidd L, O'Fallon WM, Pieroni DR, Wolfe RR, Weidman WH. Second natural history study of congenital heart defects. Results of treatment of patients with pulmonary valvar stenosis. Circulation. 1993; 87:I28-I37
    1. Keane JF, Driscoll DJ, Gersony WM, Hayes CJ, Kidd L, O'Fallon WM, Pieroni DR, Wolfe RR, Weidman WH. Second natural history study of congenital heart defects. Results of treatment of patients with aortic valvar stenosis. Circulation. 1993; 87:I16-I27
    1. Kidd L, Driscoll DJ, Gersony WM, Hayes CJ, Keane JF, O'Fallon WM, Pieroni DR, Wolfe RR, Weidman WH. Second natural history study of congenital heart defects. Results of treatment of patients with ventricular septal defects. Circulation. 1993; 87:I38-I51
    1. Diller GP, Gatzoulis MA. Pulmonary vascular disease in adults with congenital heart disease. Circulation. 2007; 115:1039-1050
    1. Afilalo J, Therrien J, Pilote L, Ionescu‐Ittu R, Martucci G, Marelli AJ. Geriatric congenital heart disease: burden of disease and predictors of mortality. J Am Coll Cardiol. 2011; 58:1509-1515
    1. Rychik J, Veldtman G, Rand E, Russo P, Rome JJ, Krok K, Goldberg DJ, Cahill AM, Wells RG. The precarious state of the liver after a Fontan operation: summary of a multidisciplinary symposium. Pediatr Cardiol. 2012; 33:1001-1012
    1. Jenkins KJ, Beekman Iii RH, Bergersen LJ, Everett AD, Forbes TJ, Franklin RC, Klitzner TS, Krogman ON, Martin GR, Webb CL. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease—the perspective of cardiology. Cardiol Young. 2008; 18suppl 2:116-123
    1. Jacobs ML, Jacobs JP, Franklin RC, Mavroudis C, Lacour‐Gayet F, Tchervenkov CI, Walters H, Bacha EA, Clarke DR, William Gaynor J, Spray TL, Stellin G, Ebels T, Maruszewski B, Tobota Z, Kurosawa H, Elliott M. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease—the perspective of cardiac surgery. Cardiol Young. 2008; 18suppl 2:101-115
    1. Larovere JM, Jeffries HE, Sachdeva RC, Rice TB, Wetzel RC, Cooper DS, Bird GL, Ghanayem NS, Checchia PA, Chang AC, Wessel DL. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease—the perspective of critical care. Cardiol Young. 2008; 18suppl 2:130-136
    1. Vener DF, Jacobs JP, Schindler E, Maruszewski B, Andropoulos D. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease—the perspective of anaesthesia. Cardiol Young. 2008; 18suppl 2:124-129
    1. Welke KF, Karamlou T, Diggs BS. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease—a comparison of administrative and clinical data. Cardiol Young. 2008; 18suppl 2:137-144
    1. Jacobs JP, Haan CK, Edwards FH, Anderson RP, Grover FL, Mayer JE, Jr, Chitwood WR., Jr The rationale for incorporation of HIPAA compliant unique patient, surgeon, and hospital identifier fields in the STS database. Ann Thorac Surg. 2008; 86:695-698
    1. Johnson SB, Whitney G, Mcauliffe M, Wang H, Mccreedy E, Rozenblit L, Evans CC. Using global unique identifiers to link autism collections. J Am Med Inform Assoc. 2010; 17:689-695
    1. Strickland MJ, Riehle‐Colarusso TJ, Jacobs JP, Reller MD, Mahle WT, Botto LD, Tolbert PE, Jacobs ML, Lacour‐Gayet FG, Tchervenkov CI, Mavroudis C, Correa A. The importance of nomenclature for congenital cardiac disease: implications for research and evaluation. Cardiol Young. 2008; 18suppl 2:92-100
    1. Skorton DJ, Garson A, Jr, Allen HD, Fox JM, Truesdell SC, Webb GD, Williams RG. Task force 5: adults with congenital heart disease: access to care. J Am Coll Cardiol. 2001; 37:1193-1198
    1. Verheugt CL, Uiterwaal CS, Van Der Velde ET, Meijboom FJ, Pieper PG, Sieswerda GT, Plokker HW, Grobbee DE, Mulder BJ. The emerging burden of hospital admissions of adults with congenital heart disease. Heart. 2010; 96:872-878
    1. 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
    1. Sable C FE, Uzark K, Bjornsen K, Canobbio MM, Connolly HM, Graham TP, Gurvitz MZ, Kovacs A, Meadows AK, Reid GJ, Reiss JG, Rosenbaum KN, Sagerman PJ, Saidi A, Schonberg R, Shah S, Tong E, Williams RGAmerican Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, Council on Peripheral Vascular Disease Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation. 2011; 123:1454-1485
    1. IOM Better Care at Lower Cost: the Path to Continuously Learning Health Care in America. 2012The National Academies Press: Washington, DC
    1. Pasquali SK, Ohye RG, Lu M, Kaltman J, Caldarone CA, Pizarro C, Dunbar‐Masterson C, Gaynor JW, Jacobs JP, Kaza AK, Newburger J, Rhodes JF, Scheurer M, Silver E, Sleeper LA, Tabbutt S, Tweddell J, Uzark K, Wells W, Mahle WT, Pearson GDPediatric Heart Network Investigators Variation in perioperative care across centers for infants undergoing the Norwood procedure. J Thorac Cardiovasc Surg. 2012; 144:915-921
    1. Kugler JD, Beekman Iii RH, Rosenthal GL, Jenkins KJ, Klitzner TS, Martin GR, Neish SR, Lannon C. Development of a pediatric cardiology quality improvement collaborative: from inception to implementation. From the Joint Council on Congenital Heart Disease Quality Improvement Task Force. Congenit Heart Dis. 2009; 4:318-328
    1. Reid GJ, Webb GD, Barzel M, Mccrindle BW, Irvine MJ, Siu SC. Estimates of life expectancy by adolescents and young adults with congenital heart disease. J Am Coll Cardiol. 2006; 48:349-355
    1. Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, Del Nido P, Fasules JW, Graham TP, Jr, Hijazi ZM, Hunt SA, King ME, Landzberg MJ, Miner PD, Radford MJ, Walsh EP, Webb GD. ACC/AHA 2008 Guidelines for the Management of Adults with Congenital Heart Disease: a Report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (writing committee to develop guidelines on the management of adults with congenital heart disease). Circulation. 2008; 118:E714-E833
    1. Petrella RJ, Speechley M, Kleinstiver PW, Ruddy T. Impact of a social marketing media campaign on public awareness of hypertension. Am J Hypertens. 2005; 18:270-275
    1. Asbury LD, Wong FL, Price SM, Nolin MJ. The VERB campaign: applying a branding strategy in public health. Am J Prev Med. 2008; 34:S183-S187

Source: PubMed

3
Abonner