Survival in Children With Congenital Heart Disease: Have We Reached a Peak at 97%?

Survival in Children With Congenital Heart Disease: Have We Reached a Peak at 97%?

Mandalenakis Z, Giang KW, Eriksson P, Liden H, Synnergren M, Wåhlander H, Fedchenko M, Rosengren A, Dellborg M.J Am Heart Assoc. 2020 Nov 17;9(22):e017704. doi: 10.1161/JAHA.120.017704. Epub 2020 Nov 6.PMID: 33153356 Free article.


Take Home Points:

  • There is a significant improvement in survival for patients with congenital heart disease (CHD) in Sweden born between 1980 and 2009.
  • Survival, however, did not further increase since the turn of the last century.
  • Improved therapeutic and diagnostic strategies might have contributed to an increased mortality in CHD patients.

Dr. Inga Voges


Commentary from Dr. Inga Voges (Kiel, Germany), section editor of Pediatric & Fetal Cardiology Journal Watch: The results from this Swedish registry study raise an important question summarized in the study title: Is there no further improvement in survival of congenital heart disease (CHD) patients over the last decade?


The authors used three different Swedish national registries to identify CHD patients born between 1st January 1980 and 31st December 2017. Patients were categorized into 6 different lesion groups (lesion group 1: conotruncal defects; lesion group 2: non-conotruncal defects; lesion group 3: aortic coarctation; lesion group 4: ventricular septal defect; lesion group 5: atrial septal defect, lesion group 6: all other CHD patients not included in group 1-5).


64,396 CHD patients and 639,012 matched controls were identified (Table 1). As expected, the mortality in the CHD group was higher compared to the group of matched controls and this was found for all lesion groups (Table 2). Mortality was highest in the group of patients born between 1980 and 1989. The Risk of mortality decreased with increasing age in CHD patients.


Survival was better in the birth period 1990-1999 compared to the period 1980-1989 as well as in the period 2000-2010 compared to the period 1990-1999. No further improvement in survival was found for patients born between 2010 and 2017 (Figure 1). Compared to matched controls mortality was higher in all birth periods. Cardiac interventions were found to have a beneficial impact on survival until the 2000s (Figure 2).


These data should encourage us not only continuing with the current high standard of care for patients with CHD, but also to make efforts in developing new diagnostic, therapeutic and educational strategies for a further improvement in survival and outcome of CHD patients.