A heart defect is one of the most common congenital malformations. In Germany, around 6,500 children are born with a congenital heart defect every year. Thanks to medical and technological progress, more than 90 percent of them now reach adulthood. However, adults with congenital heart defects (EMAH) have an increased risk of mental disorders, such as depression and anxiety disorders. The extent to which these are related to trauma is still unclear. It is now considered proven that many patients develop post-traumatic stress disorder (PTSD) after stressful medical interventions or in the context of serious illnesses. Despite these findings, no systematic studies have been conducted to assess PTSD in adults with congenital heart disease. However, it can be assumed that the incidence and prevalence of PTSD is significantly underestimated in organ-medicine-oriented care and that, concomitantly, potentially negative factors influencing the course of treatment are disregarded.

It is at this point that a project of the Sport Psychology Unit entitled "Analysis of Posttraumatic Stress Disorder in Adults with Congenital Heart Disease (ABS-AHF): Preparing for a Holistic Approach to Care" now aims to address. It was successfully funded by Caroline Andonian, PhD student of Prof. Dr. Jürgen Beckmann and Research Associate at the German Heart Center Munich, and is now being conducted. Prof. Beckmann is a co-applicant in this project. The study is funded by the German Heart Foundation (Deutsche Herzstiftung) with approximately 80,000 euros and has a duration of 18 months.

By investigating for the first time the presence of PTSD in adults with congenital heart defects and relevant influencing variables, the aim is to gain a better knowledge of preventable problems and inherent resources as a basis for the development of psychocardiological care for these patients. The project will identify risk and protective factors for the development of PTSD. Based on this, practitioners will be empowered to identify predictable risk factors for psychological distress in adults with congenital heart defects and to prevent them, if possible. As a long-term goal, a holistic care concept for children, adolescents and adults with congenital heart defects is to be developed, which includes medical and psychosocial aspects in equal measure.

"Heart problems are always problems that touch the heart," says Andonian. "However, the purely scientific focus to date has long ignored the psychological well-being of many of those affected. At the German Heart Center in Munich, we have therefore initiated a large-scale study of the psychological state and quality of life of more than 4,000 patients with congenital heart defects. Our long-term goal is to stabilize medical treatment successes of the last decades, to promote the best possible recovery and to strengthen the life satisfaction of affected patients."

"In the case of congenital heart defects, in some cases several heart operations have to be performed at an early age, which is associated with corresponding hospitalization. This sometimes results in longer separations from the parents. This often affects the entire family system," says Prof. Beckmann, head of the former Chair of Sport Psychology and now member of the TUM Senior Excellence Faculty. "The stressful consequences that occur are often not recognized right away and have not been included in treatment concepts until now. We now want to start at this point and find out how we can intervene from a psychotherapy perspective and treat PTSD in people with congenital heart defects."

The project involves a mixed-method design consisting of quantitative and qualitative surveys. Psychological outcome variables will be collected via exploratory psychometric questionnaires as part of a prospective cross-sectional epidemiological study. In addition, a qualitative assessment of idiographic narrative aspects of psychosocial health and potentially traumatic experiences in adults with congenital heart defects will be conducted via semi-structured interviews. By combining quantitative and qualitative methods, we aim to complement each other with findings that will lead to a broader and deeper understanding of the psychosocial situation of adults with congenital heart defects.

"First, we want to obtain reliable prevalence data on PTSD in adults with congenital heart defects, then evaluate influencing and risk factors," Andonian said. "We're particularly interested in what modifiable factors can be identified to use to establish psychological support measures as part of a holistic approach to cardiac care."

The data then generated will be used to establish an evidence-based foundation for prevention and treatment interventions for PTSD in adults with congenital heart defects. Down the road, the intention is to isolate subgroup-specific characteristics to allow for tailored treatment.

To the homepage of the Sport Psychology Unit

To the homepage of the German Heart Center Munich

Contact:

Prof. Dr. Jürgen Beckmann
TUM Senior Excellence Faculty
Arcisstr. 21
80333 München

e-mail: Juergen.Beckmann(at)tum.de

Caroline Andonian
German Heart Center Munich
Clinic for Congenital Heart Defects and Pediatric Cardiology
Psychocardiology Unit
Lazarettstr. 36
80636 München

e-mail: andonian(at)dhm.mhn.de
 

Text: Romy Schwaiger
Photos: German Heart Foundation/private