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Monitoring of congenital cardiac defects
L E Carlgren1, A Ericson, B Källén
1Department of Pediatrics I, University of Gothenburg, Sweden.
Insights
This study identified congenital cardiac defects in Swedish infants born in 1981, finding approximately 9 per 1000 newborns affected. Surveillance efforts highlighted the importance of specific registries for accurate congenital heart defect tracking.
Area of Science:
- Pediatrics
- Cardiology
- Public Health
Background:
- Congenital cardiac defects (CCDs) are a significant concern in infant health.
- Accurate identification and surveillance are crucial for understanding CCD epidemiology.
- Sweden utilized multiple registries to capture CCD cases in 1981.
Purpose of the Study:
- To identify and quantify infants with congenital cardiac defects born in Sweden in 1981.
- To evaluate the effectiveness of different national registries for CCD surveillance.
- To provide initial epidemiologic data on CCDs in the studied cohort.
Main Methods:
- Utilized four Swedish registries: Congenital Malformations, Medical Birth, Death Certificates, and a dedicated Child Cardiology Registry.
- Included infants diagnosed before one year of age at specialized clinics.
- Employed International Statistical Classification (ISC) codes for cardiac diagnoses and introduced a Monitor Code for data grouping.
Main Results:
- Identified 853 infants with a diagnosis of congenital cardiac defect (9 per 1000 newborns).
- Confirmed probable diagnosis in 708 infants (7.6 per 1000).
- Recorded 146 infant deaths among those with CCDs.
Conclusions:
- The Child Cardiology Registry and Congenital Malformation Registry are effective for surveillance, covering 85%-90% of severe cases.
- The Medical Birth Registry's data quality is insufficient for meaningful CCD surveillance.
- Epidemiologic data on maternal factors, sex distribution, and birth weight were collected for 1981-1983.
Abstract:
An effort was made to identify all infants born with a congenital cardiac defect in 1981 in Sweden by using four different registries: the Swedish Registry of Congenital Malformations, the Medical Birth Registry, the Registry of Death Certificates, and a specially designed Child Cardiology Registry. All infants diagnosed before the age of one year at one of the five child cardiology clinics in Sweden were reported to the latter registry. This registry, together with the Congenital Malformation Registry, can be used for surveillance as they together cover 85%-90% of all severe cases identified. The data quality in the Medical Birth Registry is too low to permit meaningful surveillance. A total of 853 infants with a diagnosis of a congenital cardiac defect were identified. This represents 9 per 1000 newborns. Many of the cases were dubious, but the diagnosis was stated as probable in 708 (7.6 per 1000); 146 infants died. Cardiac diagnoses were stored in the Child Cardiology Registry and in the Registry of Congenital Malformations as ISC codes. A Monitor Code is described that can be used for grouping and monitoring of diagnoses. Using these codes, data in the Child Cardiology Registry for 1981-1983 were analyzed and epidemiologic information on maternal age and parity, sex rate, and birth weight distribution is given.