Education, Training and Career
Educational Barriers in Children with Congenital Heart Defects and Trisomy 21
Mental impairment is a key factor
Scientific name of the study
New Insights into the Education of Children with Congenital Heart Disease with and without Trisomy 21
As part of a new study by the Competence Network for Congenital Heart Defects, young patients with congenital heart defects were asked about their school career. The results showed that one in three preschool children with congenital heart defects suffers from psychological impairments. Among children with congenital heart defects and trisomy 21, the rate was well over 80 percent.
"The mental health of children and adolescents with congenital heart defects urgently needs more attention, both in research and through regular follow-up examinations in practice, as well as through appropriate individual support," says Ulrike Bauer, Managing Director of the Competence Network for Congenital Heart Defects and the National Register for Congenital Heart Defects.
Generally Good in School
Children with congenital heart defects generally keep up well with their healthy peers at school, in some cases through high school. But their academic progress is no certainty. "There are big differences. We know that the physical growth, cognitive and psychosocial development of children with congenital heart defects can be severely impaired. A severe congenital heart defect and trisomy 21 favor such developmental delays," explains Katharina Schmitt from the German Heart Center Berlin (DHZC). Since November 2023, the pediatric cardiologist has been Germany's first W3 professor for developmental pediatrics in cardiology.
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Educational Disadvantages Usually Compensable
According to a representative survey of participants in the National Register for Congenital Heart Defects in 2017, 45.7 percent of children with congenital heart defects achieved A-levels. Even among patients with severe congenital heart defects, 35.1 percent achieved university entrance qualifications, compared to 57.3 percent of those with mild heart defects and 47.5 percent of those with moderate heart defects. This was similar to the national average at the time.
"The comparison may be somewhat flawed," says Paul Helm, a psychologist at the National Registry, commenting on the study results. "In a survey based on voluntary participation, possible bias effects can never be completely ruled out. Nevertheless, the results are reliable and, above all, encouraging. They show that a successful school career is possible regardless of the severity of the heart defect," says Paul Helm. "The high rate of high school graduation also shows that targeted individual support can compensate for the educational disadvantages associated with congenital heart defects, for example due to hospital and rehabilitation stays, but also due to developmental delays caused by illness".
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For the first time an interdisciplinary team of researchers has now comprehensively investigated how these impairments affect school careers. "Our findings are crucial for the quality of life of patients so that we can intervene and provide targeted support at an early stage," says DHZC specialist Constanze Pfitzer, who was jointly responsible for the project.
Data From 2,783 Registry Participants
For the first comprehensive study on educational outcomes in patients with congenital heart defects with and without trisomy 21, researchers examined data from a total of 2,873 patients aged between 14 and 19 years.
A total of 32.1 percent of the included patients had a simple congenital heart defect according to the Warnes classification, 36.9 percent had a moderate, and 31 percent a severe congenital heart defect. The most common congenital heart defects were ventricular septal defects (24.9 percent) and atrial septal defects (10.9 percent).
Heart Defects Can Affect Your School Career
109 participants were diagnosed with trisomy 21. The genetic condition, which is associated with a congenital heart defect in well over one-third of those affected, is considered the most common cause of cognitive impairment and learning disabilities.
In addition to medical data, the researchers analyzed responses from two large surveys on school and education among participants in the National Registry. They also took the educational background of the parents into account. "The results of our study show that congenital heart defects are associated with an increased risk of impaired school development, especially when the heart defect is associated with a syndromic underlying disease such as trisomy 21," says Constanze Pfitzer.
Only One in Nine Children with Trisomy 21 Attend Regular Elementary School
Only 11 percent of the children with a congenital heart defect and trisomy 21 were attending a regular primary school. In contrast, 87.1 percent of all other children with congenital heart defects attended a regular primary school. Integration classes were attended by 32.1 percent of children with a congenital heart defect and trisomy 21, but only 2.9 percent of children with a congenital heart defect without trisomy 21.
Small Age Differences in School Enrolment and Transition
Both groups started school between the ages of six and seven. However, children with congenital heart disease and trisomy 21 started school slightly later. At 89 percent, the majority of this patient group started in a special education school.
About four years later, between the ages of ten and eleven, the children in both groups entered secondary school, although the children with trisomy 21 were slightly older when they entered school, on average almost 11 years old.
Only One in Eight Children with Trisomy 21 Makes it to Secondary school
37.5 percent of children with a congenital heart defect without trisomy 21 attended high school and 6.5 percent attended a special school. In contrast, only 1.8 percent of children with a congenital heart defect and trisomy 21 attended high school.
The proportion of pupils in the latter group receiving special education was eight times higher than that of children with a congenital heart defect without trisomy 21. Of the children with a congenital heart defect and trisomy 21, only about one in eight (12.8 percent) attended secondary school.
Special Support Requirements
For 78 percent of the children with trisomy 21, the parents surveyed stated that they had received special educational assistance for at least three months since starting school due to specific learning disabilities. In the group of children with a congenital heart defect without trisomy 21, only 28.4 percent had received special support. It was also found that the more severe the congenital heart defect, the less likely the child was to attend primary or secondary school, and the more likely it was to attend a special school.
Children with severe congenital heart defects were more likely to require support measures and had longer absences from school. "The study shows that a possible developmental delay in children with a congenital heart defect can often be explained by a syndromic underlying disease such as trisomy 21. This underscores the importance of early multidisciplinary support that goes beyond medical care. An important goal must be social integration, independence, and self-determination in adulthood," says Professor Katarina Schmitt.
Parental Education Level Influences School Support
Parental education also plays a role. Early intervention was used to a similar extent by all children with congenital heart defects. However, the proportion of children in mainstream schools and the use of inclusive forms of schooling increased with the level of education of the parents.
This is also true for attendance at upper secondary school. Here, children of parents with a higher level of education had a clear advantage. In this group, the proportion of students attending grammar school was 46.1 per cent, compared to 36.2 per cent for parents with a medium level of education and only 25.5 per cent for parents with a low level of education.
"Educational opportunities in Germany are still a question of parental income and educational level. This deplorable situation has been scientifically proven for decades. Our study tends to confirm this for children with congenital heart defects as well," says psychologist Paul Helm of the National Register. The researchers attribute the similar proportion of children with congenital heart defects attending high school or other secondary school compared to the national average to the fact that children with congenital heart defects receive more support than their healthy peers.
Creating Educational Equity
"We see this as an indication that more educational equality can be achieved through early preschool support," says Paul Helm. The researchers are convinced that early identification of cognitive and psychological handicaps and appropriate early support can also increase the chances of children with severe congenital heart defects and underlying syndromic diseases to achieve the best possible level of education and success in working life, social integration, and a largely independent life.
Mental Health is a Key Factor
What was striking was the high proportion of children with a mental impairment. The respondents reported this for about one third of all patients included (33.3%). Children with a congenital heart defect and trisomy 21 were particularly affected: 82.6 percent (compared to 31.4 percent of heart children without trisomy 21) in this group showed significantly more delays in speech, mental and motor development, as well as learning disabilities and social and emotional impairments.
Anxiety disorders, attention deficit hyperactivity disorder (ADHD), and depression have been reported mainly in the group of patients without trisomy 21, but have also been found in other studies, particularly in patients with trisomy 21. Half of the participants in the study were receiving support measures such as speech and occupational therapy, physiotherapy, or psychotherapy before starting school. Children with a congenital heart defect and trisomy 21 were significantly more likely to require these.
Multidisciplinary Follow-Up Required
From the researchers' point of view, the results of the study support the need for holistic and interdisciplinary medical care for children with congenital heart defects. "Neurological, psychological, and psychiatric specialists, as well as occupational therapists and physiotherapists, should be consulted during regular check-ups in order to identify developmental delays and psychological impairments at an early stage and to be able to counteract them with targeted measures," advises Professor Katharina Schmitt.
This could significantly improve the long-term prognosis and quality of life for patients. It could also help children with severe congenital heart defects and trisomy 21 to have access to a school career that allows them to lead a more self-determined life.
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Scientific Details of the Study
Learn more about the study design, materials and methods, and background on the study:
Publications
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14.11.2023
New Insights into the Education of Children with Congenital Heart Disease with and without Trisomy 21.
Schmitt KRL, Sievers LK, Hütter A, Abdul-Khaliq H, Poryo M, Berger F, Bauer UMM, Helm PC, Pfitzer C
Medicina (Kaunas, Lithuania) 59, 11, (2023). Show this publication on PubMed.
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