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Improved major congenital heart disease detection confers more pregnancy terminations
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Improved detection rates of major congenital heart disease from 1996 to 2013 in Denmark have led to increased pregnancy terminations, according to a study published in JAMA Cardiology.
Danish pregnancies
Rebekka Lytzen, MD, of the department of cardiology at Copenhagen University Hospital Rigshospitalet in Denmark, and colleagues analyzed data from 14,057 children (median age, 11 years; 7,131 boys) and 631 terminated fetuses with congenital heart disease from 1996 to 2013.
Major congenital heart disease was defined as complex malformations of the heart and great arteries that typically require intervention within the first year of life. This includes conditions such as truncus arteriosus, Ebstein’s anomaly, tetralogy of Fallot and pulmonary atresia with ventricular septal defect. Patients and fetuses were then grouped by congenital heart disease diagnosis.
Of those diagnosed with congenital heart disease, 18.4% had major congenital heart disease (95% CI, 17.8-19.1). The live-birth incidence of all congenital heart disease was 1.22% (95% CI, 1.18-1.26), which did not significantly change throughout the study. There was a decrease in the live-birth incidence of major congenital heart disease (0.23% to 0.15%; OR = 0.68; 95% CI, 0.54-0.85). When terminated pregnancies were included, the incidence of congenital heart disease in all fetuses was 1.26% (95% CI, 1.22-1.3) and remained constant throughout the study.
The detection rate of major congenital heart disease increased from 4.5% in 1996 (95% CI, 1.2-7.8) to 71% in 2013 (95% CI, 63.3-78.7).
In 2013, prenatal detection was successful in identifying all cases of Ebstein’s anomaly, double outlet right ventricle, pulmonary atresia with ventricular septal defect and congenitally corrected transposition of the great arteries. Coarctation of the aorta had the lowest detection rate (21.7%; 95% CI, 3.5-40).
Termination rates
Pregnancy termination rates increased from 0.6% in 1996 (95% CI, –0.6 to 1.9) to 39.1% in 2013 (95% CI, 30.9-47.4). More than half of pregnancies with prenatally diagnosed major congenital heart disease were terminated (57.8%; 95% CI, 54.4-61.2). The proportion of terminations did not change throughout the study period.
Each type of congenital heart disease diagnosis led to at least one pregnancy termination.
“Our findings, as well of those of others, have shown that clinical experience of the sonographer has an effect on prenatal detection,” Lytzen and colleagues wrote. “Furthermore, tertiary centers had a higher detection rate in first-time scanned fetuses than referral hospitals. It is imperative to ensure high-quality examinations across hospitals. The complete implementation of 3-vessel and outflow tracts views enhances the detectability of major [congenital heart disease], but further centralization of malformation scans may further improve detection rates.”
In a related editorial, Alexander A. Kon, MD, clinical professor of pediatrics at University of California San Diego School of Medicine, wrote: “While [prenatal screening] for major [congenital heart disease] is likely to benefit children and families through greater empowerment to make family choices and through improved outcomes for affected infants, there are risks as well. Lack of universal [prenatal screening] also leads to greater disparity between those of higher and lower [socioeconomic status], with significant implications. Clinicians must use all available data to best support families in a nonjudgmental and supportive fashion and must understand the breadth of choices families may reasonably make.” – by Darlene Dobkowski
Disclosures: The authors and Kon report no relevant financial disclosures.
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