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Knowledge and Communication

Patient Survey: All is Well?

Psychologists and Social Counselors are Rarely Consulted

Scientific name of the study

Congenital heart disease patients' and parents' perception of disease‐specific knowledge: Health and impairments in everyday life.

Each year, about 7,000 children are born with congenital heart disease in Germany; 90 percent of these nowadays reach adulthood. When turning 18, patients have sole responsibility for getting necessary medical prevention and advice. However, this is the time when many of them tend to misjudge their own state of health, which is dangerous. This was the result of the presented study by the National Register for Congenital Heart Defects.

Living with congenital heart disease means a particular challenge. There is no comparison between before and after. The disease has always been there. At first, the parents take care of their child's health and wellbeing; then, when turning 18, the patients take over themselves. It is this transition in particular that is precarious.

Knowing About the Own Disease

In congenital heart disease, regular prevention and good medical advice determine the patients' health and quality of life throughout their whole life. Hence, knowing about the own disease and ensuing limitations is essential for survival.

But how do those affected themselves perceive their knowledge regarding the disease? How do they rate their health situation? To what extent do they feel limited in everyday life? And how many of them seek professional psychosocial support? The researchers at the National Register wanted to get to the heart of these questions. For this, they interviewed 587 Register members between ten and thirty years, as well as 231 parents of underage patients.

Good Ratings in Spite of Severe Heart Disease

Most of the respondents indicated that they felt well or very well informed regarding their disease. This was independent of their heart defect's severity. The highest ratings regarding their own knowledgeability was found among adult patients. Parents assessed their own level of knowledge as significantly higher than that of their children. The children themselves rated their own knowledge as lower than that of their parents. The lowest rating regarding their own knowledge was found in adolescents between fourteen and seventeen years.

In spite of their chronic illness, most patients rated their state of health as good or even very good; in everyday life, they hardly feel limited; this applied particularly to the adolescent patients. At the same time, parents assumed their children's state of health to be better and difficulties in everyday life to be smaller than the children themselves did.

Psychosocial Support is Hardly Used

Only 6.5 percent of the patients reported to have used psychosocial guidance. Of these, especially patients with complex congenital heart disease had made use of respective counseling services. In this context, patients that had used counseling turned out to rate their state of health as lower than the remaining 93.5 percent did. Mentioned group also rated their everyday situation more critically.

Realistic Self-Assessment?

The scientists were surprised by this study's results. „We are certainly happy to find that many of the respondents give such a positive assessment of their state of health. Should they, however, misjudge their state of health and, as a result, neglect necessary preventive healthcare, they risk life-threatening secondary diseases,“ Paul Helm, one of the study authors, points out. 

Targeted Empowerment in Handling the Disease

According to the psychologist, the fact that especially adolescent patients rate their state of health as very good can be attributed to their suffering particularly from their perceived inability to compete with healthy peers. „Many patients fear to be excluded for that reason. That is when they prefer to trivialize their being chronically ill“, so Helm. Due to this, scientists put particular emphasis on a targeted empowerment of patients and their relatives in mindfully handling their chronic illness. Professional psychosocial counseling could contribute to this. However, it is used only rarely, which might be attributable to the fear of being stigmatized. 

Call for Improvement of Interdisciplinary Care

Treating physicians should therefore inform patients and their parents regarding suitable counseling services and help them access these services within the scope of routine follow-up care. „It is our major aim to make patients realize that it is anything but crazy or uncool to seek professional advice," states Dr. Ulrike Bauer, Managing Director of the National Register for Congenital Heart Defects. According to the view of the study authors, comprehensive and interdisciplinary care that includes accompanying psychosocial counseling can be of immense importance when it comes to avoiding sequelae and resulting long-term complications; this holds true especially for the transition phase from childhood to adulthood.

  • Scientific Details of the Study

    The results are based on an online survey in which 587 Register members between ten and thirty years who had mild and severe congenital heart disease, as well as 231 parents of children with congenital heart disease, took part.

    In this study by the National Register, respondents rated their subjective level of information, as well as their own state of health, or the state of health of their child, respectively, on a scale from 1 ("not good") to ten ("very good"). The degree of being limited in everyday life was rated on a scale from 1 ("very high") to 10 (very low). In addition, participants answered the question whether they had received psychosocial support in the past or, if this was not the case, whether they would have wished for such support. Answers were analyzed according to age, sex and severity of the heart defect.

    Learn more about the study design, material and methods, as well as the study's background.

    Learn more about the study design, material and methods, as well as the background of the study:


    • 5/2018

      Congenital heart disease patients' and parents' perception of disease-specific knowledge: Health and impairments in everyday life.

      Helm PC, Kempert S, Körten MA, Lesch W, Specht K, Bauer UMM

      Congenital heart disease 13, 3, 377-383, (2018). Show this publication on PubMed.


The study results were first published in January 2018 in the journal „Congenital Heart Disease“: Helm, P. C., Kempert, S., Körten, M. A., Lesch, W., Specht, K., & Bauer, U. M. Congenital heart disease patients' and parents' perception of disease‐specific knowledge: Health and impairments in everyday life.

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