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. 2023 Nov 14;59(11):2001.
doi: 10.3390/medicina59112001.

New Insights into the Education of Children with Congenital Heart Disease with and without Trisomy 21

Katharina R L Schmitt  1   2   3 , Laura K Sievers  4 , Alina Hütter  1   2 , Hashim Abdul-Khaliq  5 , Martin Poryo  5 , Felix Berger  1   2   3 , Ulrike M M Bauer  3   6 , Paul C Helm  6 , Constanze Pfitzer  1   2
Affiliations

New Insights into the Education of Children with Congenital Heart Disease with and without Trisomy 21

Katharina R L Schmitt et al. Medicina (Kaunas). .

Abstract

Background and Objectives: Patients with congenital heart disease (CHD), especially as a concomitant syndromal disease of trisomy 21 (T21), are at risk for impaired neurodevelopment. This can also affect these patients' education. However, there continues to be a research gap in the educational development of CHD patients and T21 CHD patients. Materials and Methods: In total, data from 2873 patients from the German National Register for Congenital Heart Defects were analyzed. The data are based on two online education surveys conducted among patients registered in the National Register for Congenital Heart Defects (2017, 2020). Results: Of 2873 patients included (mean age: 14.1 ± 4.7 years, 50.5% female), 109 (3.8%) were identified with T21 (mean age: 12.9 ± 4.4 years, 49.5% female). T21 CHD participants had a high demand for early specific interventions (overall cohort 49.1%; T21 cohort 100%). T21 CHD children more frequently attended special schools and, compared to non-trisomy 21 (nT21) CHD patients, the probability of attending a grammar school was reduced. In total, 87.1% of nT21 CHD patients but 11% of T21 CHD patients were enrolled in a regular elementary school, and 12.8% of T21 CHD patients could transfer to a secondary school in contrast to 35.5% of nT21 CHD patients. Most of the T21 CHD patients were diagnosed with psychiatric disorders, e.g., learning, emotional, or behavioral disorders (T21 CHD patients: 82.6%; nT21 CHD patients: 31.4%; p < 0.001). Conclusions: CHD patients are at risk for impaired academic development, and the presence of T21 is an aggravating factor. Routine follow-up examinations should be established to identify developmental deficits and to provide targeted interventions.

Keywords: congenital heart disease; education; neurodevelopment; school career; trisomy 21.

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Conflict of interest statement

The authors declare that there are no conflict of interest.

Figures

Figure 1
Figure 1
Psychological disorders in CHD patients with/without trisomy 21. *** denotes p < 0.001; ** denotes p < 0.01; * denotes p < 0.05.
Figure 2
Figure 2
Support measures in CHD patients with and without trisomy 21; percentage of patients using support measures including division into different CHD severity groups; all differences between patients with and without trisomy 21 are significant (p < 0.001).
Figure 3
Figure 3
School enrollment and school transfer to secondary school; * Significant differences in early intervention between patients with and without trisomy 21 (p < 0.001); In the last pie chart, the added percentages add up to 99.9% and not 100%, as only one decimal place is given and therefore inaccuracies arise due to rounding up or down.
See this image and copyright information in PMC

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