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Updated: Aug 30, 2025
07:27
Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
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Last year of life of adults with congenital heart diseases: causes of death and patterns of care
Liesbet Van Bulck1,2, Eva Goossens1,3, Lucas Morin4,5
1Department of Public Health and Primary Care, KU Leuven - University of Leuven, Kapucijnenvoer 35 (box 7001), 3000, Leuven, Belgium.
European Heart Journal
|August 28, 2022
Summary
Adults with congenital heart disease (CHD) experience high healthcare utilization in their last year of life, often involving intensive care. Improving end-of-life care is crucial for these patients.
Area of Science:
- Cardiology
- Public Health
- Geriatrics
Background:
- Adult congenital heart disease (CHD) survival has improved, but premature mortality remains a concern.
- Understanding end-of-life trajectories in adults with CHD is essential for improving care.
Purpose of the Study:
- To define causes of death in adults with CHD.
- To describe healthcare utilization patterns in the final year of life for adults with CHD.
Main Methods:
- Retrospective mortality follow-back study using Belgian healthcare claims and clinical data (BELCODAC).
- Analysis of healthcare utilization including procedures, physician contacts, hospitalizations, emergency department (ED) visits, intensive care unit (ICU) admissions, and palliative care.
Main Results:
- 45% of deaths were cardiovascular.
- High end-of-life healthcare utilization: 87% hospitalized, 78% had ED visits, 19% ICU admissions.
- Specialist palliative care was received by only 17% of patients, and 4% of those with cardiovascular deaths.
Conclusions:
- High use of intensive and potentially avoidable care at the end of life suggests room for improvement in care provision.
- Future research should focus on patient needs and preferences to optimize end-of-life care systems for adults with CHD.
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