Children with congenital heart defects are increasingly more likely to get catheter-based interventions and at younger ages, with survival mirroring the upwards trends, according to 39 years of data in Denmark.
Median age at first procedure fell from 3.4 years in 1977-1989 to 0.8 years in 1990-2002 to , reported Signe H. Larsen, MD, PhD, of Aarhus University Hospital, and colleagues.
Catheter-based interventions -- first recorded by the Danish National Registry of Patients in 1990 -- had become more popular over time, their use growing from 5.8% in 1990-2002 to 25.9% in 2003-2015. Meanwhile, more and more children went without any surgeries at all (4.8% in 1990-2002 versus 24.0% in 2003-2015), they noted in the Journal of the American College of Cardiology.
Thirty-day survival in this population appeared to make gains over the years (97% to 98% to 100% over the three periods), as did 10-year survival (80% to 87% to 93%), even as congenital heart disease remained a factor of worse survival compared with unaffected peers in Denmark.
"Despite this progress, it is evident that the improvement lies within the first few years of follow-up. Thereafter, the congenital heart disease population continues to have a need for new cardiac surgeries or catheter-based interventions as well as a decreased survival," according to Larsen's group.
Nevertheless, "the amazing part of the story is truly noteworthy," commented Kathy J. Jenkins, MD, MPH, of Boston Children's Hospital.
"The authors report near-universal early survival since 2003. The data tell a fabulous story of modern medical advancement and the parallel tale of relief of suffering for both parents and children. The existence of the data itself is also pretty amazing, especially to U.S.-based scientists, who can look with envy at the longitudinal population-based information available in the Danish National Registry, with only a single case with missing follow-up in 4 decades," she wrote in an .
"The public health and healthcare delivery system in Denmark appears to be deploying its resources wisely, and Danish people affected by congenital heart disease have likely benefitted from the centralization in care in just 2 locations, to optimize clinical experience despite a small overall case volume."
In total, the Danish database identified 9,372 children with congenital heart disease who were treated from 1977 to 2015. For the purposes of the survival comparison with the general population, Larsen's group found 10 controls per congenital heart disease patient matched by sex and age.
Importantly, the proportion with complex diagnoses fell (34.6% in 1977-1989 versus 30.7% in 2003-2015).
"This was probably the result of the introduction of second trimester screening for congenital heart disease in the third period, enabling a parental decision to terminate pregnancy," the authors suggested.
Jenkins seemed to agree. "This practice by Danish parents reflects their concerns about the multiple lifelong challenges faced by people with complex congenital heart disease, and emphasizes the need for secondary prevention of death and disability directly from congenital heart disease, its treatment, and associated conditions," she said.
"Perhaps in time, parents in Denmark and elsewhere will feel more optimistic about the quality of life their children with congenital heart disease will experience," Jenkins wrote. "This will only occur if countries with limited resources find a way to provide reliable treatments for congenital heart diseases as is the story in Denmark, and if countries with more resources dedicate them to secondary prevention."
Disclosures
Larsen's group disclosed no relevant relationships with industry.
Jenkins disclosed relevant relationships with Medtronic, NuMed, and Novartis,
Primary Source
Journal of the American College of Cardiology
Larsen SH, et al "Interventional treatment of patients with congenital heart disease nationwide: Danish experience over 39 years" J Am Coll Cardiol 2017; DOI: 10.1016/j.jacc.2017.03.587.
Secondary Source
Journal of the American College of Cardiology
Jenkins KJ "Congenital heart defects: amazing advances and ongoing challenges" J Am Coll Cardiol 2017; DOI: 10.1016/j.jacc.2017.04.008