Circumstances of death in adult congenital heart disease

A Carla Zomer1, Ilonca Vaartjes, Cuno S P M Uiterwaal

  • 1Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands.

Insights

Mortality in adults with congenital heart disease (CHD) varies by region and season. Most deaths occur at rest, with a small percentage during exercise, highlighting the need for tailored care for this population.

Area of Science:

  • Cardiology
  • Public Health
  • Epidemiology

Background:

  • This is the first study to describe the circumstances of death in adults with congenital heart disease (CHD).
  • Previous research has focused on circumstances of death for other cardiovascular diseases.

Purpose of the Study:

  • To investigate the circumstances of death in a large cohort of adults with congenital heart disease (CHD).
  • To identify factors influencing mortality, including regional and seasonal variations, and the location of death (in-hospital vs. out-of-hospital).

Main Methods:

  • A review of medical records and information from healthcare providers was conducted.
  • Data were collected from a national registry of over 8000 adults with CHD.
  • Circumstances of all deaths within the cohort were analyzed.

Main Results:

  • A total of 231 deaths (2.7%) occurred over 26,500 patient-years.
  • The primary causes of death were progressive heart failure (26%) and sudden cardiac death (22%).
  • Mortality was higher in rural regions and out-of-hospital deaths were more common in rural areas (55% vs. 32%).
  • Nearly 40% of cardiovascular deaths were sudden, with 8% occurring during exercise.

Conclusions:

  • Mortality in adult CHD patients exhibits significant regional and minor seasonal variations.
  • Death typically occurs at rest, with approximately 10% of sudden cardiovascular deaths happening during physical activity.
  • Findings underscore the importance of considering geographical and temporal factors in managing adult CHD.
Abstract

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