Journal of Rare Cardiovascular Diseases

Congenital heart disease (CHD) is the most common developmental anomaly and is found in about 1% of all live-born children.
Recent progress in cardiac surgery and pediatric cardiology has resulted in large numbers of adult patients who have undergone surgical correction of complex congenital heart defects. It is estimated that about 85% of newborns with heart defects will reach adulthood.

rare cardiovascular disease; psychology; sociology; emotional problems

Baumgartner H., Bonhoeffer P., De Groot N. M. et all, ESC Guidelines for the management of grown-up congenital heart diseases. Eur Heart J 2010;31:2915-2957.

Warners C. A., Liberthson R., Danielson G. K. et all, TaskForce 1: The changing profile of congenital heart disease in adult life. JACC 2001;37:1170-117.

Lui GK, Saidi A, Bhatt AB, et all. American Heart Association Adult Congenital Heart Disease Committee of the Council on Clinical Cardiology and Council on Cardiovascular Disease in the Young; Council on Cardiovascular Radiology and Intervention; and Council on Quality of Care and Outcomes Research. Diagnosis and Management of Noncardiac Complications in Adults With Congenital HeartDisease: A Scientific Statement From the American Heart Association. Circulation. 2017;136:e348-e392.

Kovacs AH, Verstappen A. The whole adult congenital heart disease patient. Prog Cardiovasc Dis. 2011;53:247-53.

Moons P, Van Deyk K, Marquet K, De Bleser L, De Geest S, Budts W. Profile of adults with congenital heart disease having a good, moderate, or poor quality of life: a cluster analytic study. Eur J Cardiovasc Nurs. 2009;8:151-7.

Vigl M, Hager A, Bauer U, Niggemeyer E, Wittstock B, Köhn FM, Hess J, Kaemmerer H. Sexuality and subjective wellbeing in male patients with congenital heart disease. Heart. 2009;95:1179-83.

Cohen M., Mansoor D., Langut H. et all, Quality of life, depressed mood, and self-esteem in adolescents with heart disease. Psychosom Med. 2007;69:313-318.

Latal B., Helfricht S., Fischer J. E., et all, Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: a systematic review. BMC Pediatrics 2010;9:1-10.

Heusch A, Kahl HJ, Hensel KO, Calaminus G. Health-related quality of life in paediatric patients with congenital heart defects: association with the type of heart defect and the surgical technique. Qual Life Res. 2017;26:3111-3117.

Fredriksen P. M., Diseth T. H., Thaulow E., Children and adolescents with congenital heart disease: assessment of behavioral and emotional problems. Eur Child Adolesc Psychiatry 2009;18:292-300.

Gierat-Haponiuk K., Haponiuk I., Chojnicki M., Kwiatkowska J., Zielińska D., Assessment of the capacity of the physical and mental status of patients in remote period after correction of defect of the heart. Kardiochirurgia i Torakochirurgia Polska, 2009;6:293-299.

Müller J, Christov F, Schreiber C, Hess J, Hager A Exercise capacity, quality of life, and daily activity in the long-term follow-up of patients with univentricular heart and total cavopulmonary connection Eur Heart J. 2009;30:2915-20.

Giannakoulas G, Dimopoulos K. Exercise training in congenital heart disease: should we follow the heart failure paradigm? Int J Cardiol. 2010;138:109-11.

Holland JE, Cassidy AR, Stopp C, et all. Psychiatric Disorders and Function in Adolescents with Tetralogy of Fallot. J Pediatr. 2017;187:165-173.

Goldebck L., Melches J., The impact of the severity of disease and social disadvantage on quality of life In families with congenital disease. Cardiol Young 2006;16:67-75.

Gerber A. U., Torre A. H., Buscher G. et all, Direct non-medical and indirect costs for families with children with congenital cardiac defects in Germany: a survey from university centre. Cardiol Young 2010;20:178-85.