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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

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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.

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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.

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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

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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

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