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Birth prevalence of congenital heart disease (CHD) can be modified by many factors, including prenatal care, pregnancy termination and prevention, and changing sex distribution of the adult CHD population.
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As a result of decreasing mortality and increasing survival in all forms of CHD, the median age of patients has increased and adults now compose two-thirds of patients with CHD.
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Disease burden and resulting health services utilization increase significantly across the life span of the CHD
Adult Congenital Heart Disease: Scope of the Problem
Section snippets
Key points
Incidence and Birth Prevalence of Congenital Heart Disease
The product of CHD incidence and survival determines the prevalence of CHD at all ages. Thus a clear understanding of the determinants of the incidence of CHD is important in understanding the challenges of measurement using empirical data. The exact incidence of CHD cannot be accurately measured because it would require tracking the number of new cases of CHD from conception in utero. Thus, the best proxy available to estimate the incidence of new cases of CHD born each year is birth prevalence
Disease Burden
The unique needs of this population center around life-long comorbidities.21 Using the Quebec CHD database, the impact on morbidity and mortality of ongoing disease burden in those with atrial arrhythmias,22 pulmonary hypertension,23 infective endocarditis,24 cardiovascular risk factors,25 and the repeated need for interventions was documented.26
The impact on mortality remains a hard outcome targeted by clinicians, health services researchers, and administrators. The shift in mortality from
Bridging the policy to quality gap
Policy matters because CHD is a life-span disease associated with high HSU and, therefore, high health care costs. Working with policy makers we can impact resource allocation increasing capacity in terms of structure and process elements of health care delivery that will allow us to shape quality of care moving forward, ultimately impacting outcomes. Quality of care matters because it gives us the opportunity to achieve desired health outcomes. The purpose of improving quality is to provide
Summary and future directions
The prevalence of CHD on a population level is determined by birth prevalence of CHD and survival of CHD across the life span. With substantial improvement in survival, the prevalence of CHD in adults continues to increase. Two-thirds of the entire CHD population is now composed of adults, including those with severe CHD. With mortality shifts away from infants and toward adults, the landscape of comorbidity is changing. Although cardiac complications of the CHD lesion continues to account for
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Cited by (41)
The patient with congenital heart disease in ambulatory surgery
2023, Best Practice and Research: Clinical AnaesthesiologyOutcomes in Adult Congenital Heart Disease: Neurocognitive Issues and Transition of Care
2020, Pediatric Clinics of North AmericaCitation Excerpt :Survival for patients born with moderate to complex CHD has significantly improved, now greater than 90% of infants born with CHD survive to adulthood, leading to a rapidly growing population of adults with CHD. It is estimated that more than 2.4 million people currently live with CHD in the United States, including more than 1.4 million adults and 1 million children.1,2 As this patient population continues to age, a more comprehensive and innovative approach is required to provide their care, with a shift from survival to a focus on improving their quality of life.
Right Ventricular Failure and Congenital Heart Disease
2020, Cardiology ClinicsCitation Excerpt :As patients survive further into adulthood, the long-term complications of congenital and repaired physiology have been more clearly elucidated. A major source of health care use in ACHD patients is a result of the treatment for heart failure.2 The overall mortality of patients with ACHD with heart failure stands at around 4%, which is significantly higher than patients with ACHD without heart failure, even after controlling for age and comorbidities.2
The Future of Adult Congenital Heart Disease Research: Precision Health Services Delivery for the Next Decade
2019, Canadian Journal of Cardiology
Disclosures: The authors have no conflict of interest to disclose. Dr A.J. Marelli is a Clinical Scholar of the Fonds de Recherche Santé Québec whose research is supported by the Heart and Stroke Foundation of Canada and the Canadian Institute of Health Research, both of which are publically funded institutions.