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Education, Training and Career

A Normal School Career despite Congenital Heart Disease?

New Study Investigates the Effect of Developmental Delays

Scientific name of the study

Nationwide survey to assess the cognitive development of children with congenital heart disease considering somatic, medical and socioeconomic factors - PAN-KU-Education Study

In some circumstances, language, perceptiveness and motor skills develop more slowly in children with congenital heart disease as compared to healthy children. So far, only insufficient scientific knowledge has been available regarding the question of how exactly such developmental delays impact the school career of those affected. At the Department of Congenital Heart Disease – Pediatric Cardiology at Deutsches Herzzentrum Berlin, we are currently tackling this question for the first time.

Prof. Dr. med. Katharina Schmitt and PD Dr. med. Constanze Pfitzer (FLTR) conduct research at Deutsches Herzzentrum Berlin. © DHZB | Christian Maier
Prof. Dr. med. Katharina Schmitt and PD Dr. med. Constanze Pfitzer (FLTR) conduct research at Deutsches Herzzentrum Berlin.

Good at School

Our previous research in collaboration with the Competence Network for Congenital Heart Defects has revealed that a large proportion of the patients with congenital heart disease complete their school career with good results. Of the respondents taking part in this previous study, 45 percent earned a high school diploma (German Abitur). However, many patients experience limitations with respect to their school career. In our study, which is currently being planned, we will therefore analyze the different factors that have a potential influence on the school career of children with congenital heart disease. These factors may include issues such as the heart defect itself (regarding the question of whether it is severe or mild), the circumstances the patients find themselves in (the education level of the parents) and also the cognitive and motor development of the children.

Nationwide Online Survey

For this purpose, we will conduct a nationwide online survey among patients whose medical data were recorded in the PAN Study. The PAN Study, which took place from 2006 to 2009, was the first comprehensive study to determine the frequency of congenital heart disease in newborns in Germany. Particular attention was paid to patients who, as newborns, had shown a head circumference below the standard value: A head circumference that is below the standard potentially suggests impaired brain development. According to medical studies, these patients, especially, have a particular risk of developmental delays.

  • Background

    The PAN-Study as a Research Basis

    Congenital heart disease in Germany

    With this image, the Competence Network advertised the PAN-Study to recruit participants. The data of approximately 20,000 patients across the nation were able to be recorded. © Nationales Register | Archivbild
    With this image, the Competence Network advertised the PAN-Study to recruit participants. The data of approximately 20,000 patients across the nation were able to be recorded.

    In 2018, the study was published under the title “Somatic Development in Children with Congenital Heart Defects.“ The representative data basis for the study was provided by the PAN-Study which investigated the prevalence of the primary disease. It had been conducted by the Competence Network for Congenital Heart Defects. In the PAN-Study (Prevalence of congenital heart defects in newborns in Germany), the nationwide prevalence of congenital heart disease in newborns was determined prospectively for the first time. Over a period of four years, the scientists involved recorded and analyzed an extensive amount of data on the heart malformation situation in newborns of several consecutive birth years. The PAN-Study involved the nationwide collaboration of pediatric cardiology clinics, children’s hospitals and outpatient pediatric cardiologists in private practice from all over Germany. The results yielded important evidence of fundamental deficits in the medical care provided to children, adolescents and adults with congenital heart disease.

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Study is Supposed to Alleviate Fear

The study’s results may help to alleviate parents’ fear of a potential neurological impairment of their children. In addition, they are intended to help prevent or reduce developmental delays by means of improved follow-up concepts. Furthermore, the results are hoped to contribute to an early detection of special needs in order to initiate appropriate measures.

The study is funded by Deutsche Herzstiftung.

In charge of the project:

  • PD Dr. med. Constanze Pfitzer, DHZB © DHZB

    PD Dr. med. Constanze Pfitzer

    Constanze Pfitzer is doing her residency in pediatric cardiology at the Department of Congenital Heart Disease – Pediatric Cardiology at Deutsches Herzzentrum Berlin, as well as at the Charité (Berlin). More

    Deutsches Herzzentrum Berlin
    Klinik für angeborene Herzfehler und Kinderkardiologie

    Augustenburger Platz 1
    13353 Berlin
  • Prof. Dr. Katharina Schmitt, DHZB © DHZB

    Prof. Dr. med. Katharina Schmitt

    Katharina Schmitt is a senior physician at the Department of Congenital Heart Disease – Pediatric Cardiology at Deutsches Herzzentrum Berlin. More

    Deutsches Herzzentrum Berlin
    Klinik für angeborene Herzfehler und Kinderkardiologie

    Augustenburger Platz 1
    13353 Berlin

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