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Patients with congenital heart disease gravely misjudge their state of health

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Congenital heart defects (CHD) are severe chronic diseases. Yet most patients with chronic heart disease aged between ten and thirty assess their own health as good to very good. Moreover, they barely feel impaired in their everyday lives. Only very few patients make use of counselling offered by psychologists and social workers. These are the findings of a study of the National Register for Congenital Heart Defects (NRCHD) funded by the German Centre for Cardiovascular Research (DZHK) that experts find alarming.

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In principle, it is encouraging that the patients assess their state of health so positively”, says Paul Helm, psychologist and one of the authors of the study. “Yet the findings also worried us. After all, these are severe chronic diseases that are associated with significant impairments and require continuous preventive care and medical support.” If one’s own health is misjudged and thus the required preventive healthcare is neglected, it can lead to life-threatening secondary diseases.

587 patients with simple and complex CHD aged between ten and thirty and 231 parents of patients took part in the study of the National Register for Congenital Heart Defects. The parents assessed their children’s state of health even better than the children themselves. Even impairments in everyday life were evaluated as less severe than by their affected children. For the scientists, this is an indication of how necessary targeted counselling and support for patients and their next of kin is.

Better assessment through psychosocial support

Support offered by social workers and psychologists is still seldom taken advantage of. Only 6.5 percent of patients stated that they have made use of this kind of support. Helm finds this alarming, since the few patients that received psychosocial support assessed their health and the associated everyday difficulties more realistically than the average patient. And according to the expert, such a realistic self-assessment is important and desired in order to deal with the disease appropriately.

The psychologist supposes that a possible explanation for the positive self-assessment by the patients is that if a person has a congenital disease, they have never experienced the difference between being healthy and sick themselves. Moreover, the figures of the study reveal that among the participants surveyed it is especially adolescents that misjudge their health. “During the phase of transition from childhood to adulthood, many of the patients suffer from being unable to keep up with their peers and are scared they will be ostracised because of this”, explains Helm. “That they are ill is therefore often downplayed.” This is where psychosocial support can make a valuable contribution for an appropriate self-assessment and learning how to deal with their disease in a positive way.

Help is neither uncool nor crazy

The scientists furthermore assume that many patients and even their parents do not seek the help of a psychologist or social worker for fear of stigmatisation. “A central aim is therefore to firmly embed in their minds that it is anything but weak, crazy or uncool to seek professional help”, says Dr. Ulrike Bauer, physician and manager of the National Register for Congenital Heart Defects. According to the physician, this is because seeking appropriate support oneself is the key to a good quality of life. Contact details of reputable support is available from the treating physician and the Bundesverband Herzkranke Kinder e. V.


Original study: Helm PC, Kempert S, Koerten M-A, Lesch W, Specht K, Bauer UMM. Congenital heart disease patients’ and parents’ perception of disease-specific knowledge: Health and impairments in everyday life. Congenital Heart Disease. 2018;00:1–7. DOI: 10.1111/chd.12581

Contact: Christine Vollgraf, Public Relations Officer, German Centre for Cardiovascular Research (DZHK), phone: +49 30 3456 529 02, presse(at)dzhk.de

Paul Helm, National Register for Congenital Heart Defects, helm(at)kompetenznetz-ahf.de

Dr. Ulrike Bauer, Competence Network for Congenital Heart Defects, ubauer(at)kompetenznetz-ahf.de