Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Review Article
  • Published:

Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults

Nature Reviews Cardiology volume 20, pages 126–137 (2023)Cite this article

Subjects

Abstract

The epidemiology of congenital heart disease (CHD) has changed in the past 50 years as a result of an increase in the prevalence and survival rate of CHD. In particular, mortality in patients with CHD has changed dramatically since the latter half of the twentieth century as a result of more timely diagnosis and the development of interventions for CHD that have prolonged life. As patients with CHD age, the disease burden shifts away from the heart and towards acquired cardiovascular and systemic complications. The societal costs of CHD are high, not just in terms of health-care utilization but also with regards to quality of life. Lifespan disease trajectories for populations with a high disease burden that is measured over prolonged time periods are becoming increasingly important to define long-term outcomes that can be improved. Quality improvement initiatives, including advanced physician training for adult CHD in the past 10 years, have begun to improve disease outcomes. As we seek to transform lifespan into healthspan, research efforts need to incorporate big data to allow high-value, patient-centred and artificial intelligence-enabled delivery of care. Such efforts will facilitate improved access to health care in remote areas and inform the horizontal integration of services needed to manage CHD for the prolonged duration of survival among adult patients.

Key points

  • Measurable changes in the prevalence of congenital heart disease (CHD) in the past decades are the result of evolving trends in birth prevalence and survival of patients over time.

  • Changes in birth prevalence over time and by region are, at least in part, attributable to variations in the availability of diagnostic tools and ascertainment.

  • Despite regional variations, the survival rates of patients with CHD have improved globally as evidenced by an increasing median age of CHD populations.

  • With prolonged survival among patients with CHD, the disease burden is shifting away from the heart and towards acquired cardiovascular and systemic complications throughout the lifespan.

  • Lifespan disease trajectories for CHD populations with a high disease burden measured over prolonged time windows are becoming increasingly important to define long-term outcomes that can be improved.

  • Strategically deployed, high-quality care will facilitate the integration of services that are needed to manage CHD and related comorbidities for the duration of the patient’s life.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Fig. 1: Understanding the building blocks of CHD epidemiology.
Fig. 2: Prevalence of CHD in Quebec, Canada.
Fig. 3: Change in the global prevalence of CHD in low and high SDI countries.
Fig. 4: Map of USA showing the gradient of deficit in ACHD centres in each state.

Similar content being viewed by others

References

  1. Khairy, P. et al. Changing mortality in congenital heart disease. J. Am. Coll. Cardiol. 56, 1149–1157 (2010).

    Article  Google Scholar 

  2. Marelli, A. The future of adult congenital heart disease care symposium: changing demographics of congenital heart disease. Prog. Pediatr. Cardiol. 34, 85–90 (2012). The paper provides the basic concepts of epidemiology of CHD and its determinants.

    Article  Google Scholar 

  3. Liu, Y. et al. Global birth prevalence of congenital heart defects 1970–2017: updated systematic review and meta-analysis of 260 studies. Int. J. Epidemiol. 48, 455–463 (2019). The study is a systematic review and meta-analysis of the birth prevalence of CHD.

    Article  Google Scholar 

  4. Dadvand, P., Rankin, J., Shirley, M. D., Rushton, S. & Pless-Mulloli, T. Descriptive epidemiology of congenital heart disease in Northern England. Paediatr. Perinat. Epidemiol. 23, 58–65 (2009).

    Article  Google Scholar 

  5. Rodriguez Dehli, C. et al. [The epidemiology of congenital heart disease in Asturias (Spain) during the period 1990-2004]. An. Pediatr. 71, 502–509 (2009).

    CAS  Google Scholar 

  6. Riehle-Colarusso, T. et al. Congenital heart defects and receipt of special education services. Pediatrics 136, 496–504 (2015).

    Article  Google Scholar 

  7. Wilson, P. D., Correa-Villasenor, A., Loffredo, C. A. & Ferencz, C. Temporal trends in prevalence of cardiovascular malformations in Maryland and the district of Columbia, 1981–1988. The Baltimore-Washington Infant Study Group. Epidemiology 4, 259–265 (1993).

    Article  CAS  Google Scholar 

  8. Oyen, N. et al. National time trends in congenital heart defects, Denmark, 1977-2005. Am. Heart J. 157, 467–473 e461 (2009).

    Article  Google Scholar 

  9. van der Linde, D. et al. Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J. Am. Coll. Cardiol. 58, 2241–2247 (2011).

    Article  Google Scholar 

  10. Malcic, I. & Dilber, D. [Distribution of congenital heart disease in Croatia and outcome analysis. a Croatian epidemiological study (2002–2007)]. Lijec. Vjesn. 133, 81–88 (2011).

    Google Scholar 

  11. Yu, M. et al. The survey of birth defects rate based on birth registration system. Chin. Med. J. 128, 7–14 (2015).

    Article  Google Scholar 

  12. Xie, D., Yang, T., Liu, Z. & Wang, H. Epidemiology of birth defects based on a birth defect surveillance system from 2005 to 2014 in Hunan Province, China. PLoS One 11, e0147280 (2016).

    Article  Google Scholar 

  13. Liu, S. et al. Association between maternal chronic conditions and congenital heart defects: a population-based cohort study. Circulation 128, 583–589 (2013).

    Article  Google Scholar 

  14. Kolo, P. M., Adeoye, P. O., Omotosho, A. B. & Afolabi, J. K. Pattern of congenital heart disease in Ilorin, Nigeria. Niger. Postgrad. Med. J. 19, 230–234 (2012).

    CAS  Google Scholar 

  15. Robida, A., Folger, G. M. & Hajar, H. A. Incidence of congenital heart disease in Qatari children. Int. J. Cardiol. 60, 19–22 (1997).

    Article  CAS  Google Scholar 

  16. Subramanyan, R., Joy, J., Venugopalan, P., Sapru, A. & al Khusaiby, S. M. Incidence and spectrum of congenital heart disease in Oman. Ann. Trop. Paediatr. 20, 337–341 (2000).

    Article  CAS  Google Scholar 

  17. Egbe, A. et al. Temporal variation of birth prevalence of congenital heart disease in the United States. Congenit. Heart Dis. 10, 43–50 (2015).

    Article  Google Scholar 

  18. Botto, L. D., Correa, A. & Erickson, J. D. Racial and temporal variations in the prevalence of heart defects. Pediatrics 107, E32 (2001).

    Article  CAS  Google Scholar 

  19. Jung, S. C., Kim, S. S., Yoon, K. S. & Lee, J. S. Prevalence of congenital malformations and genetic diseases in Korea. J. Hum. Genet. 44, 30–34 (1999).

    Article  CAS  Google Scholar 

  20. Lamichhane, D. K. et al. Increased prevalence of some birth defects in Korea, 2009–2010. BMC Pregnancy Childbirth 16, 61 (2016).

    Article  Google Scholar 

  21. Yeh, S. J. et al. Prevalence, mortality, and the disease burden of pediatric congenital heart disease in Taiwan. Pediatr. Neonatol. 54, 113–118 (2013).

    Article  Google Scholar 

  22. Plana, M. N. et al. Pulse oximetry screening for critical congenital heart defects. Cochrane Database Syst. Rev. 3, CD011912 (2018).

    Google Scholar 

  23. Mahle, W. T. et al. Endorsement of health and human services recommendation for pulse oximetry screening for critical congenital heart disease. Pediatrics 129, 190–192 (2012).

    Article  Google Scholar 

  24. Wong, K. K. et al. Canadian Cardiovascular Society/Canadian Pediatric Cardiology Association position statement on pulse oximetry screening in newborns to enhance detection of critical congenital heart disease. Can. J. Cardiol. 33, 199–208 (2017).

    Article  Google Scholar 

  25. Manzoni, P. et al. Pulse oximetry screening for critical congenital heart defects: a European consensus statement. Lancet Child. Adolesc. Health 1, 88–90 (2017).

    Article  Google Scholar 

  26. Zhao, Q. M. et al. Pulse oximetry with clinical assessment to screen for congenital heart disease in neonates in China: a prospective study. Lancet 384, 747–754 (2014).

    Article  Google Scholar 

  27. Hom, L. A. & Martin, G. R. Newborn critical congenital heart disease screening using pulse oximetry: value and unique challenges in developing regions. Int. J. Neonatal Screen. 6, 74 (2020).

    Article  Google Scholar 

  28. Martin, G. R. et al. Updated strategies for pulse oximetry screening for critical congenital heart disease. Pediatrics https://doi.org/10.1542/peds.2019-1650 (2020).

    Article  Google Scholar 

  29. Warnes, C. A. et al. Task force 1: the changing profile of congenital heart disease in adult life. J. Am. Coll. Cardiol. 37, 1170–1175 (2001).

    Article  CAS  Google Scholar 

  30. Oster, M. E. et al. Temporal trends in survival among infants with critical congenital heart defects. Pediatrics 131, e1502–e1508 (2013).

    Article  Google Scholar 

  31. Boneva, R. S. et al. Mortality associated with congenital heart defects in the United States: trends and racial disparities, 1979-1997. Circulation 103, 2376–2381 (2001).

    Article  CAS  Google Scholar 

  32. Pillutla, P., Shetty, K. D. & Foster, E. Mortality associated with adult congenital heart disease: trends in the US population from 1979 to 2005. Am. Heart J. 158, 874–879 (2009).

    Article  Google Scholar 

  33. Raissadati, A., Nieminen, H., Haukka, J., Sairanen, H. & Jokinen, E. Late causes of death after pediatric cardiac surgery: a 60-year population-based study. J. Am. Coll. Cardiol. 68, 487–498 (2016).

    Article  Google Scholar 

  34. 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 122, 2264–2272 (2010).

    Article  Google Scholar 

  35. Mandalenakis, Z. et al. Survivorship in children and young adults with congenital heart disease in Sweden. JAMA Intern. Med. 177, 224–230 (2017). The study assessed survival in children and young adults with CHD compared with matched controls from the general population.

    Article  Google Scholar 

  36. van der Bom, T. et al. Contemporary survival of adults with congenital heart disease. Heart 101, 1989–1995 (2015).

    Article  Google Scholar 

  37. GBD 2017 Congenital Heart Disease Collaborators. Global, regional, and national burden of congenital heart disease, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet Child. Adolesc. Health 4, 185–200 (2020). The study provides a systematic analysis of the global prevalence of CHD in 1990 and 2017.

    Google Scholar 

  38. Marelli, A. J. et al. Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation 130, 749–756 (2014). The study provides an empirical analysis of the lifetime prevalence of CHD during the first decade of the twenty-first century.

    Article  Google Scholar 

  39. Benziger, C. P., Stout, K., Zaragoza-Macias, E., Bertozzi-Villa, A. & Flaxman, A. D. Projected growth of the adult congenital heart disease population in the United States to 2050: an integrative systems modeling approach. Popul. Health Metr. 13, 29 (2015).

    Article  Google Scholar 

  40. van der Bom, T., Bouma, B. J., Meijboom, F. J., Zwinderman, A. H. & Mulder, B. J. The prevalence of adult congenital heart disease, results from a systematic review and evidence based calculation. Am. Heart J. 164, 568–575 (2012).

    Article  Google Scholar 

  41. Wu, M. H., Lu, C. W., Chen, H. C., Kao, F. Y. & Huang, S. K. Adult congenital heart disease in a nationwide population 2000-2014: epidemiological trends, arrhythmia, and standardized mortality ratio. J. Am. Heart Assoc. https://doi.org/10.1161/JAHA.117.007907 (2018).

    Article  Google Scholar 

  42. Bouchardy, J. et al. Atrial arrhythmias in adults with congenital heart disease. Circulation 120, 1679–1686 (2009).

    Article  Google Scholar 

  43. Cohen, S. et al. Risk prediction models for heart failure admissions in adults with congenital heart disease. Int. J. Cardiol. https://doi.org/10.1016/j.ijcard.2020.08.039 (2020).

    Article  Google Scholar 

  44. van Riel, A. C. et al. Contemporary prevalence of pulmonary arterial hypertension in adult congenital heart disease following the updated clinical classification. Int. J. Cardiol. 174, 299–305 (2014).

    Article  Google Scholar 

  45. Lin, Y. S. et al. Major adverse cardiovascular events in adult congenital heart disease: a population-based follow-up study from Taiwan. BMC Cardiovasc. Disord. 14, 38 (2014).

    Article  Google Scholar 

  46. Kuijpers, J. M. et al. Risk of coronary artery disease in adults with congenital heart disease: a comparison with the general population. Int. J. Cardiol. 304, 39–42 (2020).

    Article  Google Scholar 

  47. Bouma, B. J. & Mulder, B. J. Changing landscape of congenital heart disease. Circ. Res. 120, 908–922 (2017).

    Article  CAS  Google Scholar 

  48. Kwiatek-Wrzosek, A., Kowalik, E., Kowalski, M. & Hoffman, P. The burden of cardiovascular risk factors among seniors with congenital heart disease: a single tertiary center experience. Kardiol. Pol. 79, 1251–1255 (2021).

    Article  Google Scholar 

  49. Goldstein, S. A. et al. Causes of death and cardiovascular comorbidities in adults with congenital heart disease. J. Am. Heart Assoc. 9, e016400 (2020).

    Article  Google Scholar 

  50. Lanz, J. et al. Stroke in adults with congenital heart disease: incidence, cumulative risk, and predictors. Circulation 132, 2385–2394 (2015).

    Article  Google Scholar 

  51. International Cardiac Collaborative on Neurodevelopment Investigators. Impact of operative and postoperative factors on neurodevelopmental outcomes after cardiac operations. Ann. Thorac. Surg. 102, 843–849 (2016).

    Article  Google Scholar 

  52. Sterling, L. H. et al. Neurocognitive disorders amongst patients with congenital heart disease undergoing procedures in childhood. Int. J. Cardiol. 336, 47–53 (2021).

    Article  Google Scholar 

  53. Cohen, S. et al. Exposure to low-dose ionizing radiation from cardiac procedures and malignancy risk in adults with congenital heart disease. Circulation 137, 1334–1345 (2018).

    Article  Google Scholar 

  54. Chong, L. S. H. et al. Children’s experiences of congenital heart disease: a systematic review of qualitative studies. Eur. J. Pediatr. 177, 319–336 (2018).

    Article  Google Scholar 

  55. Delaney, A. E. et al. Parents’ perceptions of emerging adults with congenital heart disease: an integrative review of qualitative studies. J. Pediatr. Health Care 35, 362–376 (2021).

    Article  Google Scholar 

  56. Svensson, M. K., Wahlberg, A. & Gislason, G. H. Chronic paradoxes: a systematic review of qualitative family perspectives on living with congenital heart defects. Qual. Health Res. 30, 119–132 (2020).

    Article  Google Scholar 

  57. Deng, L. X. et al. Prevalence and correlates of post-traumatic stress disorder in adults with congenital heart disease. Am. J. Cardiol. 117, 853–857 (2016).

    Article  Google Scholar 

  58. Westhoff-Bleck, M. et al. Mental disorders in adults with congenital heart disease: unmet needs and impact on quality of life. J. Affect. Disord. 204, 180–186 (2016).

    Article  Google Scholar 

  59. Eslami, B. Correlates of posttraumatic stress disorder in adults with congenital heart disease. Congenit. Heart Dis. 12, 357–363 (2017).

    Article  Google Scholar 

  60. Kasmi, L. et al. Neurocognitive and psychological outcomes in adults with dextro-transposition of the great arteries corrected by the arterial switch operation. Ann. Thorac. Surg. 105, 830–836 (2018).

    Article  Google Scholar 

  61. Moreland, P. & Santacroce, S. J. Illness uncertainty and posttraumatic stress in young adults with congenital heart disease. J. Cardiovasc. Nurs. 33, 356–362 (2018).

    Article  Google Scholar 

  62. Carazo, M. R. et al. Prevalence and prognostic association of a clinical diagnosis of depression in adult congenital heart disease: results of the boston adult congenital heart disease biobank. J. Am. Heart Assoc. 9, e014820 (2020).

    Article  Google Scholar 

  63. Simeone, R. M. et al. Post-traumatic stress disorder, anxiety, and depression among adults with congenital heart defects. Birth Defects Res. 114, 124–135 (2022).

    Article  CAS  Google Scholar 

  64. Apers, S. et al. Sense of coherence and perceived physical health explain the better quality of life in adolescents with congenital heart disease. Eur. J. Cardiovasc. Nurs. 12, 475–483 (2013).

    Article  Google Scholar 

  65. Moons, P. et al. Sense of coherence in adults with congenital heart disease in 15 countries: patient characteristics, cultural dimensions and quality of life. Eur. J. Cardiovasc. Nurs. 20, 48–55 (2021).

    Article  Google Scholar 

  66. Apers, S. et al. Quality of life of adults with congenital heart disease in 15 countries: evaluating country-specific characteristics. J. Am. Coll. Cardiol. 67, 2237–2245 (2016).

    Article  Google Scholar 

  67. Schroder, M., Boisen, K. A., Reimers, J., Teilmann, G. & Brok, J. Quality of life in adolescents and young adults with CHD is not reduced: a systematic review and meta-analysis. Cardiol. Young 26, 415–425 (2016).

    Article  Google Scholar 

  68. Kahr, P. C., Radke, R. M., Orwat, S., Baumgartner, H. & Diller, G. P. Analysis of associations between congenital heart defect complexity and health-related quality of life using a meta-analytic strategy. Int. J. Cardiol. 199, 197–203 (2015).

    Article  Google Scholar 

  69. Willems, R., Werbrouck, A., De Backer, J. & Annemans, L. Real-world healthcare utilization in adult congenital heart disease: a systematic review of trends and ratios. Cardiol. Young 29, 553–563 (2019).

    Article  Google Scholar 

  70. Cedars, A. et al. Contemporary hospitalization rate among adults with complex congenital heart disease. World J. Pediatr. Congenit. Heart Surg. 7, 334–343 (2016).

    Article  Google Scholar 

  71. Ombelet, F. et al. Creating the BELgian COngenital heart disease database combining administrative and clinical data (BELCODAC): rationale, design and methodology. Int. J. Cardiol. 316, 72–78 (2020).

    Article  Google Scholar 

  72. Farr, S. L., Downing, K. F., Riehle-Colarusso, T. & Abarbanell, G. Functional limitations and educational needs among children and adolescents with heart disease. Congenit. Heart Dis. 13, 633–639 (2018).

    Article  Google Scholar 

  73. Agom, D. A., Onyeka, T. C., Iheanacho, P. N. & Ominyi, J. Barriers to the provision and utilization of palliative care in Africa: a rapid scoping review. Indian J. Palliat. Care 27, 3–17 (2021).

    Article  Google Scholar 

  74. Downing, K. F. et al. Disability among young adults with congenital heart defects: congenital heart survey to recognize outcomes, needs, and well-being 2016–2019. J. Am. Heart Assoc. 10, e022440 (2021).

    Article  Google Scholar 

  75. Sluman, M. A. et al. Education as important predictor for successful employment in adults with congenital heart disease worldwide. Congenit. Heart Dis. 14, 362–371 (2019).

    Article  Google Scholar 

  76. Mackie, A. S., Tran, D. T., Marelli, A. J. & Kaul, P. Cost of congenital heart disease hospitalizations in Canada: a population-based study. Can. J. Cardiol. 33, 792–798 (2017).

    Article  Google Scholar 

  77. Briston, D. A., Bradley, E. A., Sabanayagam, A. & Zaidi, A. N. Health care costs for adults with congenital heart disease in the United States 2002 to 2012. Am. J. Cardiol. 118, 590–596 (2016).

    Article  Google Scholar 

  78. Lonsdale, H., Jalali, A., Ahumada, L. & Matava, C. Machine learning and artificial intelligence in pediatric research: current state, future prospects, and examples in perioperative and critical care. J. Pediatr. 221, S3–S10 (2020).

    Article  Google Scholar 

  79. Baumgartner, H. et al. 2020 ESC guidelines for the management of adult congenital heart disease. Eur. Heart J. 42, 563–645 (2021).

    Article  CAS  Google Scholar 

  80. Lu, X. H. et al. Recurrent disease progression networks for modelling risk trajectory of heart failure. PLoS One 16, e0245177 (2021).

    Article  CAS  Google Scholar 

  81. Diller, G. P. et al. Lifespan perspective on congenital heart disease research: JACC state-of-the-art review. J. Am. Coll. Cardiol. 77, 2219–2235 (2021). The paper suggested a paradigm shift in CHD research towards a lifespan perspective and proactive approach to CHD care.

    Article  Google Scholar 

  82. Mei, H. & Eisner, J. M. The neural Hawkes process: a neurally self-modulating multivariate point process. in Adv. Neural Inf. Process. Syst. 6754–6764 (2017).

  83. Choi, E., Du, N., Chen, R., Song, L. & Sun, J. in 2015 IEEE International Conference on Data Mining (ICDM). 721–726 (IEEE, 2015).

  84. Bertsimas, D. et al. Adverse outcomes prediction for congenital heart surgery: a machine learning approach. World J. Pediatr. Congenit. Heart Surg. 12, 453–460 (2021).

    Article  Google Scholar 

  85. Christodoulou, E. et al. A systematic review shows no performance benefit of machine learning over logistic regression for clinical prediction models. J. Clin. Epidemiol. 110, 12–22 (2019).

    Article  Google Scholar 

  86. Van den Eynde, J. et al. Medicine-based evidence in congenital heart disease: how artificial intelligence can guide treatment decisions for individual patients. Front. Cardiovasc. Med. 8, 798215 (2021).

    Article  Google Scholar 

  87. Diller, G. P. et al. Machine learning algorithms estimating prognosis and guiding therapy in adult congenital heart disease: data from a single tertiary centre including 10 019 patients. Eur. Heart J. 40, 1069–1077 (2019).

    Article  Google Scholar 

  88. Diller, G. P. et al. Prediction of prognosis in patients with tetralogy of Fallot based on deep learning imaging analysis. Heart 106, 1007–1014 (2020).

    Article  CAS  Google Scholar 

  89. Cohen, S. & Marelli, A. Increasing survival in patients with congenital heart disease-a glass half full or half empty? JAMA Intern. Med. 177, 1690–1691 (2017).

    Article  Google Scholar 

  90. Webb, G. D. & Williams, R. G. Care of the adult with congenital heart disease: introduction. J. Am. Coll. Cardiol. 37, 1166 (2001).

    Article  CAS  Google Scholar 

  91. Stout, K. K. et al. 2018 AHA/ACC guideline 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 Clinical Practice Guidelines. J. Am. Coll. Cardiol. 73, 1494–1563 (2019).

    Article  Google Scholar 

  92. ABIM. Adult Congenital Heart Disease Policies https://www.abim.org/certification/policies/internal-medicine-subspecialty-policies/adult-congenital-heart-disease.aspx (2022).

  93. Kaemmerer, H. et al. Recommendations for improving the quality of the interdisciplinary medical care of grown-ups with congenital heart disease (GUCH). Int. J. Cardiol. 150, 59–64 (2011).

    Article  Google Scholar 

  94. Neidenbach, R. et al. Systematic assessment of health care perception in adults with congenital heart disease in Germany. Cardiovasc. Diagn. Ther. 11, 481–491 (2021).

    Article  Google Scholar 

  95. CachNet. Canadian Adult Congenital Heart Disease Network http://www.cachnet.org.

  96. ACHA. The Adult Congenital Heart Association Program Accreditation https://www.achaheart.org/your-heart/programs/accreditation/.

  97. Mylotte, D. et al. Specialized adult congenital heart disease care: the impact of policy on mortality. Circulation 129, 1804–1812 (2014). The study demonstrated the effect of specialized adult CHD care in reducing mortality.

    Article  Google Scholar 

  98. Nguyen, V. P. et al. Improved outcomes of heart transplantation in adults with congenital heart disease receiving regionalized care. J. Am. Coll. Cardiol. 74, 2908–2918 (2019).

    Article  Google Scholar 

  99. Cordina, R. et al. Management errors in adults with congenital heart disease: prevalence, sources, and consequences. Eur. Heart J. 39, 982–989 (2018).

    Article  Google Scholar 

  100. Fernandes, S. M., Marelli, A., Hile, D. M. & Daniels, C. J. Access and delivery of adult congenital heart disease care in the United States: quality-driven team-based care. Cardiol. Clin. 38, 295–304 (2020).

    Article  Google Scholar 

  101. Marelli, A. J., Therrien, J., Mackie, A. S., Ionescu-Ittu, R. & Pilote, L. Planning the specialized care of adult congenital heart disease patients: from numbers to guidelines; an epidemiologic approach. Am. Heart J. 157, 1–8 (2009).

    Article  Google Scholar 

  102. Kwan, G. F. et al. Endemic cardiovascular diseases of the poorest billion. Circulation 133, 2561–2575 (2016).

    Article  CAS  Google Scholar 

  103. Mattos Sda, S. et al. A telemedicine network for remote paediatric cardiology services in north-east Brazil. Bull. World Health Organ. 93, 881–887 (2015).

    Article  Google Scholar 

  104. Joury, A. et al. Leadless and wireless cardiac devices: the next frontier in remote patient monitoring. Curr. Probl. Cardiol. 46, 100800 (2021).

    Article  Google Scholar 

  105. United States Government Accountability Office. Artificial Intelligence in Health Care: Benefits and Challenges of Technologies to Augment Patient Care (Publication GAO-21-7SP, 2020).

  106. Hummel, K. et al. Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: a report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group. Eur. Heart J. Qual. Care Clin. Outcomes 7, 354–365 (2021). The paper reported the first international development of a stakeholder-informed standard set of outcome measures for CHD.

    Article  Google Scholar 

  107. Harahsheh, A. S. et al. American College of Cardiology body mass index counseling quality improvement initiative. Pediatr. Cardiol. 42, 1190–1199 (2021).

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. McGill Adult Unit for Congenital Heart Disease Excellence (MAUDE Unit), McGill University Health Centre, Montréal, Québec, Canada

    Aihua Liu & Ariane Marelli

  2. Department of Cardiology III – Adult Congenital and Valvular Heart Disease, University Hospital Muenster, Muenster, Germany

    Gerhard-Paul Diller

  3. Royal Brompton and Harefield NHS Trust, King’s College London, London, UK

    Gerhard-Paul Diller

  4. Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium

    Philip Moons

  5. Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden

    Philip Moons

  6. Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa

    Philip Moons

  7. The Ohio State University College of Medicine, Nationwide Children’s Hospital, Columbus Ohio Adult Congenital Heart (COACH) Program, Columbus, OH, USA

    Curt J. Daniels

  8. Department of Cardiology, Boston Children’s Hospital and Department of Paediatrics Harvard Medical School, Boston, MA, USA

    Kathy J. Jenkins

  9. Department of Medicine, McGill University, Montréal, Québec, Canada

    Ariane Marelli

Authors
  1. Aihua Liu
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Gerhard-Paul Diller
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Philip Moons
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Curt J. Daniels
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Kathy J. Jenkins
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Ariane Marelli
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

The authors contributed substantially to all aspects of the article.

Corresponding author

Correspondence to Ariane Marelli.

Ethics declarations

Competing interests

The authors declare no competing interests.

Peer review

Peer review information

Nature Reviews Cardiology thanks Peter Ewert, who co-reviewed with Michael Huntgeburth; Yves d’Udekem and the other, anonymous, reviewer(s) for their contribution to the peer review of this work.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Related links

International Consortium for Health Outcomes Measurement: http://www.ichom.org/

Rights and permissions

Springer Nature or its licensor holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Liu, A., Diller, GP., Moons, P. et al. Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults. Nat Rev Cardiol 20, 126–137 (2023). https://doi.org/10.1038/s41569-022-00749-y

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41569-022-00749-y

This article is cited by

Search

Advanced search

Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing