Abstract
Epidemiology is the study of the frequency and distribution of disease. The most commonly reported birth prevalence rates of congenital heart disease (CHD) vary from 5 to 15 per 1000 live births with a 10–15 % proportion of severe or complex lesions. Adults now account for two thirds of all CHD patients with a rapid expansion of the adolescent age group. Patients with CHD have improved mortality and survival, but life expectancy, for which there is little data, is likely the most important measure of disease burden for adolescents. Boys and men have a higher mortality and morbidity from infancy to adulthood compounded by underutilization of elective health services. It has now been shown that specialized adults with congenital heart disease (ACHD) care improves mortality, yet the majority of patients are not being followed in specialized centers. Age-specific processes of care referral need to be elaborated to improve follow-up and minimize lapses in care.
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References
Hennekens CH, Buring JE (1987) Measures of disease frequency. In: Mayrent SL (ed) Epidemiology in medicine. Little/Brown, Boston, pp 55–98
Fyler D (1980) Report of the new england regional infant cardiac program. Pediatrics 65:375–461
Perloff JK (1991) Congenital heart disease in adults. A new cardiovascular subspecialty. Circulation 84:1881–1890
Marelli AJ, Mackie AS, Ionescu-Ittu R, Rahme E, Pilote L (2007) Congenital heart disease in the general population: changing prevalence and age distribution. Circulation 115:163–172
Marelli A (2012) The future of achd care symposium: changing demographics of congenital heart disease. Prog Pediatric Cardiol 34:85–90
Hoffman J, Kaplan S (2002) The incidence of congenital heart disease. J Am Coll Cardiol 39:1890–1900
Dolk H, Loane M, Garne E, European Surveillance of Congenital Anomalies Working G (2011) Congenital heart defects in Europe: prevalence and perinatal mortality, 2000 to 2005. Circulation 123:841–849
Reller MD, Strickland MJ, Riehle-Colarusso T, Mahle WT, Correa A (2008) Prevalence of congenital heart defects in metropolitan Atlanta, 1998–2005. J Pediatr 153:807–813
van der Linde D, Konings EE, Slager MA, Witsenburg M, Helbing WA, Takkenberg JJ, Roos-Hesselink JW (2011) Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol 58:2241–2247
Marelli AJ, Ionescu-Ittu R, Mackie AS, Guo L, Dendukuri N, Kaouache M (2014) Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation 130:749–756
Mazor Dray E, Marelli AJ (2015) Adult congenital heart disease: scope of the problem. Cardiol Clin 33:503–512
Moons P, Bovijn L, Budts W, Belmans A, Gewillig M (2010) Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 122:2264–2272
Boneva R, Botto L, Moore C, Yang Q, Correa A, Erickson J (2001) Mortality associated with congenital heart defects in the united states: trends and racial disparities, 1979–1997. Circulation 103:2376–2381
Gilboa SM, Salemi JL, Nembhard WN, Fixler DE, Correa A (2010) Mortality resulting from congenital heart disease among children and adults in the united states, 1999 to 2006. Circulation 122:2254–2263
Khairy P, Ionescu-Ittu R, Mackie AS, Abrahamowicz M, Pilote L, Marelli AJ (2010) Changing mortality in congenital heart disease. J Am Coll Cardiol 56:1149–1157
Naimark D, Naglie G, Detsky AS (1994) The meaning of life expectancy: what is a clinically significant gain? J Gen Intern Med 9:702–707
Murray CJ, Lopez AD (1997) Regional patterns of disability-free life expectancy and disability-adjusted life expectancy: global burden of disease study. Lancet 349:1347–1352
Geva T, Gauvreau K, Powell AJ, Cecchin F, Rhodes J, Geva J, del Nido P (2010) Randomized trial of pulmonary valve replacement with and without right ventricular remodeling surgery. Circulation 122:S201–S208
Reid GJ, Webb GD, Barzel M, McCrindle BW, Irvine MJ, Siu SC (2006) Estimates of life expectancy by adolescents and young adults with congenital heart disease. J Am Coll Cardiol 48:349–355
Marelli A, Gauvreau K, Landzberg M, Jenkins K (2010) Sex differences in mortality in children undergoing congenital heart disease surgery: a united states population-based study. Circulation 122:S234–S240
Marcell A, Klein J, Fischer I, Allan M, Kokotailo P (2002) Male adolescent use of health care services: where are the boys? J Adolescent Health Off Pub Soc Adolescent Med 30:35–43
Zomer AC, Ionescu-Ittu R, Vaartjes I, Pilote L, Mackie AS, Therrien J, Langemeijer MM, Grobbee DE, Mulder BJ, Marelli AJ (2013) Sex differences in hospital mortality in adults with congenital heart disease: the impact of reproductive health. J Am Coll Cardiol 62:58–67
Verheugt CL, Uiterwaal CS, van der Velde ET, Meijboom FJ, Pieper PG, Vliegen HW, van Dijk AP, Bouma BJ, Grobbee DE, Mulder BJ (2008) Gender and outcome in adult congenital heart disease. Circulation 118:26–32
Mackie AS, Ionescu-Ittu R, Pilote L, Rahme E, Marelli AJ (2008) Hospital readmissions in children with congenital heart disease: a population-based study. Am Heart J 155:577–584
Mackie AS, Pilote L, Ionescu-Ittu R, Rahme E, Marelli AJ (2007) Health care resource utilization in adults with congenital heart disease. Am J Cardiol 99:839–843
Mylotte D, Pilote L, Ionescu-Ittu R, Abrahamowicz M, Khairy P, Therrien J, Mackie AS, Marelli A (2014) Specialized adult congenital heart disease care: the impact of policy on mortality. Circulation 129:1804–1812
Webb G, Landzberg MJ, Daniels CJ (2014) Specialized adult congenital heart care saves lives. Circulation 129:1795–1796
Baumgartner H, Budts W, Chessa M, Deanfield J, Eicken A, Holm J, Iserin L, Meijboom F, Stein J, Szatmari A, Trindade PT, Walker F, Working Group on Grown-up Congenital Heart Disease of the European Society of C (2014) Recommendations for organization of care for adults with congenital heart disease and for training in the subspecialty of ‘grown-up congenital heart disease’ in Europe: a position paper of the working group on grown-up congenital heart disease of the european society of cardiology. Eur Heart J 35:686–690
Silversides C, Marelli A, Beauchesne L, Dore A, Kiess M, Salehian O, Bradley T, Colman J, Connelly M, Harris L, Khairy P, Mital S, Niwa K, Oechslin E, Poirier N, Schwerzmann M, Taylor D, Vonder Muhll I, Baumgartner H, Benson L, Celermajer D, Greutmann M, Horlick E, Landzberg M, Meijboom F, Mulder B, Warnes C, Webb G, Therrien J (2010) Canadian cardiovascular society 2009 consensus conference on the management of adults with congenital heart disease: executive summary. Can J Cardiol 26:143–150
Baumgartner H, Bonhoeffer P, De Groot NM, de Haan F, Deanfield JE, Galie N, Gatzoulis MA, Gohlke-Baerwolf C, Kaemmerer H, Kilner P, Meijboom F, Mulder BJ, Oechslin E, Oliver JM, Serraf A, Szatmari A, Thaulow E, Vouhe PR, Walma E, Task Force on the Management of Grown-up Congenital Heart Disease of the European Society of C, Association for European Paediatric C, Guidelines ESCCfP (2010) Esc guidelines for the management of grown-up congenital heart disease (new version 2010). Eur Heart J 31:2915–2957
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, Smith SC Jr, Jacobs AK, Adams CD, Anderson JL, Antman EM, Buller CE, Creager MA, Ettinger SM, Halperin JL, Hunt SA, Krumholz HM, Kushner FG, Lytle BW, Nishimura RA, Page RL, Riegel B, Tarkington LG, Yancy CW, American College of C, American Heart Association Task Force on Practice G, American Society of E, Heart Rhythm S, International Society for Adult Congenital Heart D, Society for Cardiovascular A, Interventions, Society of Thoracic S (2008) 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). Developed in collaboration with the american society of echocardiography, heart rhythm society, international society for adult congenital heart disease, society for cardiovascular angiography and interventions, and society of thoracic surgeons. J Am Coll Cardiol 52:e143–e263
Gurvitz M, Valente AM, Broberg C, Cook S, Stout K, Kay J, Ting J, Kuehl K, Earing M, Webb G, Houser L, Opotowsky A, Harmon A, Graham D, Khairy P, Gianola A, Verstappen A, Landzberg M (2013) Prevalence and predictors of gaps in care among adult congenital heart disease patients: heart-achd (the health, education, and access research trial). J Am Coll Cardiol 61:2180–2184
Lu Y, Agrawal G, Lin CW, Williams RG (2014) Inpatient admissions and costs of congenital heart disease from adolescence to young adulthood. Am Heart J 168:948–955
Gurvitz MZ, Inkelas M, Lee M, Stout K, Escarce J, Chang RK (2007) Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J Am Coll Cardiol 49:875–882
Lopez K, Karlsten M, Bonaduce De Nigris F, King J, Salciccioli K, Jiang A, Marelli A, Kovacs A, Fordis M, Thompson D (2015) Understanding age-based transition needs: perspectives from adolescents and adults with congenital heart disease. Congenit Heart Dis, onL 10(6):561–571
Crutzen R, de Nooijer J, Brouwer W, Oenema A, Brug J, de Vries NK (2011) Strategies to facilitate exposure to internet-delivered health behavior change interventions aimed at adolescents or young adults: a systematic review. Health Ed Beha Offi Pub Soc Pub Health Ed 38:49–62
Rozenblum R, Miller P, Pearson D, Marelli A (2015) Patient-centered healthcare, patient engagement and health information technology: the perfect storm. In: Information technology for patient empowerment in healthcare. Walter de Gruyter Inc, Berlin, pp 3–22
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Dray, E.M., Marelli, A.J. (2016). Changing Epidemiology of Congenital Heart Disease. In: Schwerzmann, M., Thomet, C., Moons, P. (eds) Congenital Heart Disease and Adolescence. Congenital Heart Disease in Adolescents and Adults. Springer, Cham. https://doi.org/10.1007/978-3-319-31139-5_1
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DOI: https://doi.org/10.1007/978-3-319-31139-5_1
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