Epidemiological projects



The population of patients with congenital heart defects is increasing steadily as many children born with this illness now survive into adulthood. Individuals born with congenital heart disease require lifelong specialist medical care, as they may develop cardiac sequelae despite surgical or invasive procedures for their heart defect. Young patients with congenital heart disease face many challenges en route to adult medicine. An important aspect of the patients’ development is taking responsibility for their own health, which helps them make a successful shift to adult care.

Gaps in knowledge and problems encountered during the transition phase, that is, the process of gradually transferring the youngster from paediatric to adult cardiology, lead to 50–75% of affected patients neglecting to attend follow-up examinations. This puts them at increased risk of – potentially – irreversible complications and increased morbidity. Experts believe that it is essential that young people with congenital heart disease be given support and be adequately informed throughout the transition phase.


The study’s aim was to investigate: (a) the level of disease-specific knowledge, (b) information preferences, and (c) sources of information for children, adolescents, and young adults regarding their illness.

Methods and results

In total, 596 patients, aged 10–30 years, participated in this cross-sectional survey study (response rate: 53%). All patients were already enrolled in the German National Register for Congenital Heart Defects. The main outcome measures included disease-specific knowledge, information preferences, and information sources regarding patients’ individual cardiac condition. The patients demonstrated a major knowledge gap concerning their illness and how to live with it. For all three age groups, patients’ information needs were unmet on nearly half of the topics of interest. Children’s information needs were comparable to those of adolescents and adults concerning several important topics, for example, work/career, sports.

Information preferences varied according to age and gender, rather than disease severity. The most important sources of information were physicians (71.0%), family and friends (58.2%), and the Internet (37.5%). Conclusion: The study revealed substantial knowledge gaps, indicating a need for structured multidisciplinary patient education interventions. These interventions should start as early as in childhood and help patients manage their condition and assume responsibility for their own health, so that the transition phase runs smoothly.

Recruitment of patients



Lesch W, Specht K, Lux A, Frey M, Utens E, Bauer U.
Disease-specific knowledge and information needs of young patients with congenital heart disease.
Cardiol Young. 2014 Apr;24(2):321-30.


Wiebke Lesch (Dipl. Kommunikationswirt)
Project manager

Competence Network for Congenital Heart Defects
Augustenburger Platz 1
13353 Berlin

Phone: +49 30 4593 7277
E-Mail: lesch(at)kompetenznetz-ahf.de