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Updated: Oct 2, 2025

Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
Morbidity and mortality in adults with congenital heart defects in the third and fourth life decade
Matthias J Müller1, Kambiz Norozi2,3, Jonas Caroline2
1Department of Pediatric Cardiology and Intensive Care Medicine, Georg August University, Robert-Koch-Str. 40, 37075, Goettingen, Germany. matthias.mueller@med.uni-goettingen.de.
Insights
Adults with congenital heart defects (ACHD) face significant ongoing health issues and mortality after treatment. Lifelong specialized care is crucial, especially for those with moderate to severe conditions, to improve outcomes.
Area of Science:
- Cardiology
- Adult Congenital Heart Disease (ACHD)
- Longitudinal Observational Studies
Background:
- The population of adults with congenital heart defects (ACHD) is growing.
- Limited data exists on the morbidity and mortality of ACHD.
- This study addresses the need for long-term outcome data in this population.
Purpose of the Study:
- To examine the morbidity and mortality of adults with congenital heart defects (ACHD) over a 15-year period.
- To compare health outcomes of ACHD patients with a healthy control group.
- To identify risk factors and outcomes associated with different severities of congenital heart defects (CHD) after surgical correction or palliation.
Main Methods:
- Longitudinal observational study design.
- Follow-up examinations of ACHD patients who participated in an initial study.
- Comparison of mortality and hospitalization data with a healthy control group.
Main Results:
- 249 ACHD patients participated in the follow-up (68% of eligible).
- Higher incidence of health incidents (cardiac catheterization, cardiovascular surgery, etc.) in moderate and severe CHD groups compared to mild.
- Significant long-term survival reduction in severe CHD patients, with mortality rates increasing with severity.
Conclusions:
- ACHD patients experience substantial ongoing morbidity and mortality post-treatment.
- Patients with moderate and severe CHD face particularly high risks.
- Lifelong specialized medical care is essential for all surgically corrected or palliated ACHD patients.
Objectives:
The population of adults with congenital heart defects (ACHD) is continuously growing. Data on morbidity and mortality of ACHD are limited. This longitudinal observational study examined a group of ACHD with surgically corrected or palliated congenital heart defects (CHD) during a 15-year period.
Methods:
ACHD that had participated in the initial study were invited for a follow-up examination. Mortality and hospitalization data were compared with a healthy control group.
Results:
From 05/2017 to 04/2019 a total of 249/364 (68%) ACHD participated in the follow-up study: 21% had mild, 60% moderate and 19% severe CHD. During the observational period, 290 health incidents occurred (cardiac catheterization 37%, cardiovascular surgery 27%, electrophysiological study/ablation 20%, catheter interventional treatment 14%, non-cardiac surgery 3%). Events were more frequent in ACHD with moderate (53%) and severe (87%) compared to those with mild CHD (p < 0.001). 24 individuals died at a median age of 43 years during the observation period. 29% of them had moderate and 71% severe CHD corresponding to a mortality rate of 0%, 0.29% and 1.68% per patient-year in ACHD with mild, moderate and severe CHD. Long-term survival was significantly reduced in patients with severe CHD in comparison to individuals with mild and moderate CHD (p < 0.001).
Conclusion:
After correction or palliation of CHD, there was remarkable ongoing morbidity and mortality in ACHD patients over the 15-year observation period, particularly in individuals with moderate and severe CHD when compared with the general population. Thus, life-long special care is required for all surgically corrected or palliated ACHD patients.
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