Educational achievement of children with congenital heart disease: Promising results from a survey by the German National Register of Congenital Heart Defects

Early Hum Dev. 2019 Jan:128:27-34. doi: 10.1016/j.earlhumdev.2018.11.003. Epub 2018 Nov 15.


Background: Survival rates of children with congenital heart disease (CHD) have increased significantly in the decade. There is now increased interest in the long-term outcome and quality of life of these children.

Aims: To assess the educational achievement of patients with CHD in Germany.

Study design: Cross-sectional study using an online survey. The recruitment of study participants was carried out via the database of the German National Register for Congenital Heart Defects (NRCHD).

Subjects: Patients born between 1992 and 2011 were enrolled in the study. For 2609 study participants (female = 1870 (71.7%); 1072 (41.1%) patients; 1537 (58.9%) parents), who participated in the survey, detailed information regarding the underlying CHD diagnosis and clinical data was available.

Outcome measures: Age at enrollment, secondary school form, school year repetition, school degree.

Results: The large majority of study participants were enrolled at a conventional elementary school (83.4%) and started school at the age of 6 years or below (73.3%). In total 45.7% of graduated study participants graduated with the qualification necessary to study at any university. In terms of analysis of the different CHD severity subgroups 57.3% of patients with a mild CHD, 47.5% with a moderate CHD and only 35.1% suffering from a severe CHD attained a high school diploma.

Conclusions: In our study, the majority of participating CHD patients had a standard school career. These initial results are of great importance to affected families and treating physicians as they show that, in general, a normal school career is possible for all CHD patients.

Keywords: Congenital heart disease; Graduation qualification; School enrollment.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Academic Performance*
  • Adolescent
  • Adult
  • Female
  • Germany
  • Heart Defects, Congenital / epidemiology*
  • Humans
  • Male
  • Registries