Congenital heart disease in adults: evolving health systems and lifelong outcomes.

Over the past decades, advances in the diagnosis and treatment of congenital heart disease have reshaped its epidemiology. Congenital heart disease is now increasingly a chronic, lifelong disorder, with adult survivors outnumbering affected children in many countries. This demographic transition has shifted the focus from preventing early mortality towards optimizing long-term health and managing comorbidities. Adult congenital heart disease (ACHD) experience acquired cardiovascular and systemic complications that challenge traditional models of care. As the lifelong burden of disease in ACHD patients continues to rise globally, advanced training pathways in ACHD have spearheaded the content expertise required to deliver high quality of care. The well-established hub-and-scope model has been recommended in the last two decades to improve ACHD care by expanding the number of specialized centres that allow ACHD specialists to reach underserved regions more effectively. However, the advent of technology, digital health, and artificial intelligence-enhanced decision-making provides an opportunity to imagine a different approach, to coordinate advances in research, clinical care, and health system design, with particular emphasis on scalable models that align expertise, data, and delivery across the life course. Networked care structures, workforce redesign, and digitally enabled learning health systems offer a pathway to close persistent gaps in care access and quality. Ultimately, the future of ACHD care will depend on our ability to integrate these innovations into routine practice, ensuring that extended survival is matched by preserved function, quality of life, and equitable outcomes at the population scale.

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Publication Details

Journal
PubMed
Published
2026-10-05
DOI
https://doi.org/10.1093/eurheartj/ehag616
Primary Topic
Congenital Heart Disease Studies
Type
article
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article

Congenital heart disease in adults: evolving health systems and lifelong outcomes.

Curt J. Daniels, Ariane J. Marelli, Gerhard‐Paul Diller
PubMed
Congenital Heart Disease Studies
article

Congenital heart disease in adults: evolving health systems and lifelong outcomes.

Curt J. Daniels, Ariane J. Marelli, Gerhard‐Paul Diller
article en

Abstract

Over the past decades, advances in the diagnosis and treatment of congenital heart disease have reshaped its epidemiology. Congenital heart disease is now increasingly a chronic, lifelong disorder, with adult survivors outnumbering affected children in many countries. This demographic transition has shifted the focus from preventing early mortality towards optimizing long-term health and managing comorbidities. Adult congenital heart disease (ACHD) experience acquired cardiovascular and systemic complications that challenge traditional models of care. As the lifelong burden of disease in ACHD patients continues to rise globally, advanced training pathways in ACHD have spearheaded the content expertise required to deliver high quality of care. The well-established hub-and-scope model has been recommended in the last two decades to improve ACHD care by expanding the number of specialized centres that allow ACHD specialists to reach underserved regions more effectively. However, the advent of technology, digital health, and artificial intelligence-enhanced decision-making provides an opportunity to imagine a different approach, to coordinate advances in research, clinical care, and health system design, with particular emphasis on scalable models that align expertise, data, and delivery across the life course. Networked care structures, workforce redesign, and digitally enabled learning health systems offer a pathway to close persistent gaps in care access and quality. Ultimately, the future of ACHD care will depend on our ability to integrate these innovations into routine practice, ensuring that extended survival is matched by preserved function, quality of life, and equitable outcomes at the population scale.

PubMed
Guy's and St Thomas' NHS Foundation Trust (GB), McGill University Health Centre (CA), Royal Brompton Hospital (GB), University Hospital Münster (DE), Adult Congenital Heart Association (US)
Openalex Percentile: Top 11%
Congenital Heart Disease Studies
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