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Cause of death in children with heart disease: a cohort study
Neil Derridj1,2, Daphné Madec3,2, Olivier Raisky3,2
1M3C-Necker, Unité Médico-Chirurgicale de Cardiologie Congénitale et Pédiatrique, Hôpital Universitaire Necker-Enfants Malades, Paris, Île-de-France, France derridjneil@gmail.com.
Insights
Heart failure is the primary cause of death in children with congenital or acquired heart disease (CAHD), particularly in complex congenital heart disease (CHD) and premature infants within their first year of life.
Area of Science:
- Pediatric Cardiology
- Cardiovascular Research
- Mortality Studies
Background:
- Congenital or acquired heart disease (CAHD) presents significant mortality risks in children.
- Understanding specific causes of death is crucial for improving pediatric cardiac care outcomes.
Purpose of the Study:
- To detail the causes of death in pediatric patients with CAHD.
- To update mortality data across different CAHD classifications.
Main Methods:
- Prospective observational cohort study conducted from 2010 to 2024 at a tertiary pediatric cardiac center.
- Children with CAHD who died were classified into congenital heart diseases (CHD), cardiomyopathies (CM), and pulmonary hypertension (PH).
- Causes of death and demographic data were analyzed for the entire cohort and by CAHD group.
Main Results:
- Heart failure was the leading cause of death (40.2%) in children with CAHD, followed by pulmonary hypertension (PH) crisis (11.8%) and infections (11.4%).
- The majority of deaths (76.3%) occurred in children with CHD, with severe complexity and functionally univentricular hearts being common.
- Most deaths (72%) were surgical, with a notable proportion requiring extracorporeal membrane oxygenation (ECMO) or heart transplantation.
Conclusions:
- Heart failure is the predominant cause of mortality in pediatric CAHD.
- Pulmonary hypertension and infections are significant contributing factors to death.
- Mortality is highest within the first year of life, especially in complex CHD and premature infants.
Objective:
To describe causes of death in children with congenital or acquired heart disease (CAHD) and provide updated mortality data across CAHD groups.
Design:
Prospective observational cohort study (2010-2024).
Setting:
Tertiary paediatric cardiac care centre.
Patients:
All children with CAHD who died during the study period were classified into congenital heart diseases (CHD), cardiomyopathies (CM) and pulmonary hypertension (PH).
Main Outcome Measures:
Causes of death and demographic characteristics were reported for the entire cohort and by the CAHD group.
Results:
Among 1137 deaths, 244 (21.5%) occurred under compassionate care. The main cohort consisted of 868 (76.3%) children with CHD, 170 (14.9%) with CM and 50 (4.4%) with PH. The median age at death was 2.6 (IQR 14.2) months. Comorbidities and prematurity were observed in 438 (38.6%) and 348 (30.6%) cases, respectively, with no difference among groups. After excluding compassionate care, heart failure was the leading cause of death affecting 359 (40.2%) children, followed by PH crisis in 105 (11.8%) and infections in 101 (11.4%). In the CHD group, severe complexity was predominant in 516 (59.5%) cases, with functionally univentricular heart (172 (33.3%) cases) being the most common subtype. Surgical deaths constituted 625 (72%) cases, with 64 (7.4%) requiring extracorporeal membrane oxygenation (ECMO) and 69 (0.8%) listed for heart transplant. In the CM group, the dilated CM subtype was predominant, accounting for 78 (45.9%) cases, with 12 (7.1%) requiring ECMO. For the PH group, pulmonary arterial hypertension was observed in 34 (68%) cases, with 9 (18%) requiring ECMO.
Conclusions:
Heart failure is the leading cause of death in CAHD, followed by PH, with most deaths occurring within the first year of life, particularly in complex CHD and premature infants.
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