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Original article

Vol. 147 No. 1920 (2017)

Impact of growing cohorts of adults with congenital heart disease on clinical workload: a 20-year experience at a tertiary care centre

  • Maria Padrutt
  • Isabelle Bracher
  • Francesca Bonassin
  • Bruno Santos Lopes
  • Christiane Gruner
  • Simon F. Stämpfli
  • Thomas Wolber
  • Oliver Kretschmar
  • Angela Oxenius
  • Gabriella De Pasquale
  • Theresa Seeliger
  • Thomas F. Lüscher
  • Christine Attenhofer Jost
  • Matthias Greutmann
DOI
https://doi.org/10.4414/smw.2017.14443
Cite this as:
Swiss Med Wkly. 2017;147:w14443
Published
10.05.2017

Summary

BACKGROUND

Population based studies show a steady increase in adult patients with congenital heart defects. The aim of this study was to assess the evolution of such a patient cohort and its burden on clinical care at a dedicated tertiary care centre.

METHODS

All patients with congenital heart disease followed up by a dedicated multidisciplinary team at our institution were identified (n = 1725). Disease characteristics, the increase in patient numbers and interventions and the increase in selected complications were analysed and compared between the first (1996–2005) and second (2006–2015) decades of the study period.

RESULTS

Between the two decades of the study period, the number of patients in follow-up increased by 109%, the number of patients who died or underwent transplantation more than doubled and the number of outpatient visits increased by 195%. One fourth of all patients underwent at least one surgical procedure and 14% had at least one percutaneous intervention. The increase in surgical procedures between the two decades was 27% and the increase in percutaneous interventions 159%. Between the two decades the number of patients requiring direct current cardioversion increased from 32 to 95 (+197%), the number of patients requiring admission for infective endocarditis increased from 7 to 29 (+314%) and the number of women followed up during pregnancy increased from 18 to 115 (+539%).

CONCLUSION

As a result of the increasing number and complexity of adult survivors with congenital heart disease more resources will be needed to cope with the demands of this novel cohort of complex patients in adult cardiology.

References

  1. Warnes CA, Liberthson R, Danielson GK, Jr, Dore A, Harris L, Hoffman JI, et al. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol. 2001;37(5):1170–5. https://doi.org/10.1016/S0735-1097(01)01272-4
  2. Hoffman JI, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. 2002;39(12):1890–900. https://doi.org/10.1016/S0735-1097(02)01886-7
  3. van der Linde D, Konings EE, Slager MA, Witsenburg M, Helbing WA, Takkenberg JJ, et al. Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol. 2011;58(21):2241–7. https://doi.org/10.1016/j.jacc.2011.08.025
  4. Moons P, Bovijn L, Budts W, Belmans A, Gewillig M. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation. 2010;122(22):2264–72. https://doi.org/10.1161/CIRCULATIONAHA.110.946343
  5. Marelli AJ, Ionescu-Ittu R, Mackie AS, Guo L, Dendukuri N, Kaouache M. Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation. 2014;130(9):749–56. https://doi.org/10.1161/CIRCULATIONAHA.113.008396
  6. Greutmann M, Tobler D. Changing epidemiology and mortality in adult congenital heart disease: looking into the future. Future Cardiol. 2012;8(2):171–7. https://doi.org/10.2217/fca.12.6
  7. Kaemmerer H, Fratz S, Bauer U, Oechslin E, Brodherr-Heberlein S, Zrenner B, et al. Emergency hospital admissions and three-year survival of adults with and without cardiovascular surgery for congenital cardiac disease. J Thorac Cardiovasc Surg. 2003;126(4):1048–52. https://doi.org/10.1016/S0022-5223(03)00737-2
  8. Greutmann M, Tobler D, Kovacs AH, Greutmann-Yantiri M, Haile SR, Held L, et al. Increasing mortality burden among adults with complex congenital heart disease. Congenit Heart Dis. 2015;10(2):117–27. https://doi.org/10.1111/chd.12201
  9. Mylotte D, Pilote L, Ionescu-Ittu R, Abrahamowicz M, Khairy P, Therrien J, et al. Specialized adult congenital heart disease care: the impact of policy on mortality. Circulation. 2014;129(18):1804–12. https://doi.org/10.1161/CIRCULATIONAHA.113.005817
  10. Wray J, Frigiola A, Bull C ; Adult Congenital Heart disease Research Network (ACoRN). Loss to specialist follow-up in congenital heart disease; out of sight, out of mind. Heart. 2013;99(7):485–90. https://doi.org/10.1136/heartjnl-2012-302831
  11. Silversides CK, Marelli A, Beauchesne L, Dore A, Kiess M, Salehian O, et al. Canadian Cardiovascular Society 2009 Consensus Conference on the management of adults with congenital heart disease: executive summary. Can J Cardiol. 2010;26(3):143–50. https://doi.org/10.1016/S0828-282X(10)70352-4
  12. Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, et al.; 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); American Society of Echocardiography; Heart Rhythm Society; International Society for Adult Congenital Heart Disease; Society for Cardiovascular Angiography and Interventions; Society of Thoracic Surgeons. 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. 2008;52(23):e143–263. https://doi.org/10.1016/j.jacc.2008.10.001
  13. Baumgartner H, Bonhoeffer P, De Groot NM, de Haan F, Deanfield JE, Galie N, et al.; Task Force on the Management of Grown-up Congenital Heart Disease of the European Society of Cardiology (ESC); Association for European Paediatric Cardiology (AEPC); ESC Committee for Practice Guidelines (CPG). ESC Guidelines for the management of grown-up congenital heart disease (new version 2010). Eur Heart J. 2010;31(23):2915–57. https://doi.org/10.1093/eurheartj/ehq249
  14. 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(14):1149–57. https://doi.org/10.1016/j.jacc.2010.03.085
  15. 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(1):72–9. https://doi.org/10.1177/0269216311407694
  16. Tobler D, Greutmann M, Colman JM, Greutmann-Yantiri M, Librach LS, Kovacs AH. End-of-life in adults with congenital heart disease: a call for early communication. Int J Cardiol. 2012;155(3):383–7. https://doi.org/10.1016/j.ijcard.2010.10.050
  17. Tobler D, de Stoutz N, Greutmann M. Supportive and palliative care for adults dying from congenital heart defect. Curr Opin Support Palliat Care. 2011;5(3):291–6. https://doi.org/10.1097/SPC.0b013e3283492aa3
  18. Greutmann M, Pieper PG. Pregnancy in women with congenital heart disease. Eur Heart J. 2015;36(37):2491–9. https://doi.org/10.1093/eurheartj/ehv288
  19. O’Byrne ML, Glatz AC, Mercer-Rosa L, Gillespie MJ, Dori Y, Goldmuntz E, et al. Trends in pulmonary valve replacement in children and adults with tetralogy of fallot. Am J Cardiol. 2015;115(1):118–24. https://doi.org/10.1016/j.amjcard.2014.09.054

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