Increasing mortality burden among adults with complex congenital heart disease

Congenital Heart Disease

Volumn 10, Issue 2, 2015, Pages 117-127

  Greutmann, Matthias ^a,b   Tobler, Daniel ^b,c   Kovacs, Adrienne H ^b   Greutmann Yantiri, Mehtap ^b   Haile, Sarah R ^d,e   Held, Leonhard ^d   Ivanov, Joan ^b,f   Williams, William G ^g   Oechslin, Erwin N ^b   Silversides, Candice K ^b   Colman, Jack M ^b  

^a UNIVERSITY HOSPITAL ZURICH   (Switzerland)

^b UNIVERSITY HEALTH NETWORK   (Canada)

^c UNIVERSITY HOSPITAL BASEL   (Switzerland)

^d UNIVERSITY OF ZURICH   (Switzerland)

^e CANTONAL HOSPITAL ST GALLEN   (Switzerland)

^f INSTITUTE FOR CLINICAL EVALUATIVE SCIENCES   (Canada)

^g HOSPITAL FOR SICK CHILDREN   (Canada)

Author keywords

Adult congenital heart disease; Congenital heart surgery; Mortality; Outcomes

Indexed keywords

ADULT; ARTICLE; CARDIOVASCULAR MORTALITY; COHORT ANALYSIS; CONGENITAL HEART DISEASE; CYANOTIC HEART DISEASE; EISENMENGER COMPLEX; FALLOT TETRALOGY; FEMALE; FOLLOW UP; FONTAN PROCEDURE; GREAT VESSELS TRANSPOSITION; HEART RIGHT VENTRICLE; HEART SURGERY; HUMAN; LONG TERM SURVIVAL; MAJOR CLINICAL STUDY; MALE; PERIOPERATIVE PERIOD; PRIORITY JOURNAL; SURVIVAL RATE; SURVIVAL TIME; SURVIVOR; ADOLESCENT; FORECASTING; HEART DEFECTS, CONGENITAL; MIDDLE AGED; MORTALITY; TIME; YOUNG ADULT;

ADOLESCENT; ADULT; FEMALE; FORECASTING; HEART DEFECTS, CONGENITAL; HUMANS; MALE; MIDDLE AGED; SURVIVAL RATE; TIME FACTORS; YOUNG ADULT;

EID: 84927797545     PISSN: 1747079X     EISSN: 17470803     Source Type: Journal    
DOI: 10.1111/chd.12201     Document Type: Article

References (38)

1. Hoffman JI, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. 2002;39:1890-1900.
2. van der Linde D, Konings EE, Slager MA, etal. Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol. 2011;58:2241-2247.
3. Khairy P, Ionescu-Ittu R, Mackie AS, Abrahamowicz M, Pilote L, Marelli AJ. Changing mortality in congenital heart disease. J Am Coll Cardiol. 2010;56:1149-1157.
4. 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.
5. Engelfriet P, Boersma E, Oechslin E, etal. The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on Adult Congenital Heart Disease. Eur Heart J. 2005;26:2325-2333.
6. Oechslin EN, Harrison DA, Connelly MS, Webb GD, Siu SC. Mode of death in adults with congenital heart disease. Am J Cardiol. 2000;86:1111-1116.
7. Inuzuka R, Diller GP, Borgia F, etal. Comprehensive use of cardiopulmonary exercise testing identifies adults with congenital heart disease at increased mortality risk in the medium term. Circulation. 2012;125:250-259.
8. Verheugt CL, Uiterwaal CS, van der Velde ET, etal. Mortality in adult congenital heart disease. Eur Heart J. 2010;31:1220-1229.
9. Daliento L, Somerville J, Presbitero P, etal. Eisenmenger syndrome. Factors relating to deterioration and death. Eur Heart J. 1998;19:1845-1855.
10. Williams WG, McCrindle BW, Ashburn DA, Jonas RA, Mavroudis C, Blackstone EH. Outcomes of 829 neonates with complete transposition of the great arteries 12-17 years after repair. Eur J Cardiothorac Surg. 2003;24:1-9, discussion 9-10.
11. Hickey EJ, Veldtman G, Bradley TJ, etal. Late risk of outcomes for adults with repaired tetralogy of Fallot from an inception cohort spanning four decades. Eur J Cardiothorac Surg. 2009;35:156-164, discussion 164.
12. Khairy P, Fernandes SM, Mayer JE Jr, etal. Long-term survival, modes of death, and predictors of mortality in patients with Fontan surgery. Circulation. 2008;117:85-92.
13. Moons P, Bovijn L, Budts W, Belmans A, Gewillig M. Temporal trends in survival to adulthood among patients born with congenital heart disease from1970 to 1992 in Belgium. Circulation. 2010;122:2264-2272.
14. University of California, Berkeley; Max Planck Institute for Demographic Research. Human Mortality Database. Available at: www.mortality.org. Accessed October 27, 2010.
15. R Core Team. R: A Language and Environment for Statistical Computing. Vienna: R Foundation for Statistical Computing; 2012. Available at: http://www.R-project.org/
16. Kaplan EL, Meier P. Nonparametric estimation from incomplete observations. J Am Stat Assoc. 1958;53:457-481.
17. Bull K, Somerville J, Ty E, Spiegelhalter D. Presentation and attrition in complex pulmonary atresia. J Am Coll Cardiol. 1995;25:491-499.
18. Bull K, Spiegelhalter DJ. Survival analysis in observational studies. Stat Med. 1997;16:1041-1074.
19. Centre for Communicable Diseases and Infection Control. HIV and AIDS in Canada. Surveillance Report to December 31, 2009. Ottawa: Surveillance and Risk Assessment Division, Centre for Communicable Diseases and Infection Control. 2010. Available at: http://www.phac-aspc.gc.ca/aids-sida/publication/survreport/2009/dec/8-eng.php#table23. Accessed December 4, 2012.
20. Canadian Cystic Fibrosis Patient Data Registry. Canadian Cystic Fibrosis Patient Data Registry Report. 2010. Available at: http://www.cysticfibrosis.ca/assets/files/pdf/CPDR_ReportE.pdf. Accessed December 4, 2012.
21. Verheugt CL, Uiterwaal CS, van der Velde ET, etal. The emerging burden of hospital admissions of adults with congenital heart disease. Heart. 2010;96:872-878.
22. Tobler D, Greutmann M, Colman JM, Greutmann-Yantiri M, Librach LS, Kovacs AH. End-of-life care in hospitalized adults with complex congenital heart disease: care delayed, care denied. Palliat Med. 2012;26:72-79.
23. Kaemmerer H, Bauer U, Pensl U, etal. Management of emergencies in adults with congenital cardiac disease. Am J Cardiol. 2008;101:521-525.
24. O'Leary JM, Siddiqi OK, de Ferranti S, Landzberg MJ, Opotowsky AR. The changing demographics of congenital heart disease hospitalizations in the United States, 1998 through 2010. JAMA. 2013;309:984-986.
25. Carotti A, Albanese SB, Filippelli S, etal. Determinants of outcome after surgical treatment of pulmonary atresia with ventricular septal defect and major aortopulmonary collateral arteries. J Thorac Cardiovasc Surg. 2010;140:1092-1103.
26. Ishibashi N, Shin'oka T, Ishiyama M, Sakamoto T, Kurosawa H. Clinical results of staged repair with complete unifocalization for pulmonary atresia with ventricular septal defect and major aortopulmonary collateral arteries. Eur J Cardiothorac Surg. 2007;32:202-208.
27. Tobler D, Williams WG, Jegatheeswaran A, etal. Cardiac outcomes in young adult survivors of the arterial switch operation for transposition of the great arteries. J Am Coll Cardiol. 2010;56:58-64.
28. Feinstein JA, Benson DW, Dubin AM, etal. Hypoplastic left heart syndrome: current considerations and expectations. J Am Coll Cardiol. 2012;59:S1-S42.
29. Opotowsky AR, Siddiqi OK, Webb GD. Trends in hospitalizations for adults with congenital heart disease in the U.S. J Am Coll Cardiol. 2009;54:460-467.
30. Mackie AS, Pilote L, Ionescu-Ittu R, Rahme E, Marelli AJ. Health care resource utilization in adults with congenital heart disease. Am J Cardiol. 2007;99:839-843.
31. Webb G. The future of adult congenital heart disease care in the United States. Prog Cardiovasc Dis. 2011;53:324-326.
32. Hoffman JI. How many patients? How many doctors? Circulation. 2010;122:2231-2233.
33. Warnes CA, Williams RG, Bashore TM, etal. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: executive summary. A report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (writing committee to develop guidelines for the management of adults with congenital heart disease). Circulation. 2008;118:2395-2451.
34. Baumgartner H, Bonhoeffer P, De Groot NM, etal. ESC guidelines for the management of grown-up congenital heart disease (new version 2010). Eur Heart J. 2010;31:2915-2957.
35. Silversides CK, Marelli A, Beauchesne L, etal. Canadian Cardiovascular Society 2009 consensus conference on the management of adults with congenital heart disease: executive summary. Can J Cardiol. 2010;26:143-150.
36. Wren C, O'Sullivan JJ. Loss to follow-up of adults with repaired congenital heart disease. Heart. 2013;99:440-441.
37. Wray J, Frigiola A, Bull C. Loss to specialist follow-up in congenital heart disease; out of sight, out of mind. Heart. 2013;99:485-490.
38. Tutarel O, Kempny A, Alonso-Gonzalez R, etal. Congenital heart disease beyond the age of 60: emergence of a new population with high resource utilization, high morbidity, and high mortality. Eur Heart J. 2014;35:725-732.