Transition – Nachsorge für Erwachsene mit angeborenen Herzfehlern

Erwachsene mit angeborenen Herzfehlern (EmaH) sind trotz des großen Nachsorgebedarfs nur unzureichend an zertifizierte Versorgungsstrukturen angebunden und ihre Betreuung übernehmen größtenteils Hausärzte und nicht spezialisierte Kardiologen. Eine optimierte Versorgung erfordert eine regelmäßige Nachsorge und die Möglichkeit zur fächerübergreifenden Versorgung von AHF im Langzeitverlauf.

Abstract

Currently, due to medical advances, more than 500 000 patients with congenital heart defects (CHD) are living in Germany, including more than 330 000 adults. In CHD, the aspect of transition from childhood and adolescence to adulthood is becoming increasingly important to ensure long-term success of the provided treatments. This is so important because despite primarily successful treatments, residua and sequels as well as (non-) cardiac comorbidities may influence the chronic course of the disease and lead to increased morbidity and mortality. Adults with congenital heart defects in Germany are insufficiently managed by existing specialized and accredited care structures, despite the great need for follow-up, and their care is largely provided by primary care physicians (general practitioners and internists) and non-specialized cardiologists.

Optimized, future-oriented care requires regular follow-up and the possibility of interdisciplinary, integrated medical care of CHD in the long-term course.

Schlüsselwörter

angeborene Herzfehler - Transition - Adoleszenz - Erwachsene mit angeborenem Herzfehler

Key words

congenital heart disease - transition - adolescence - adults with congenital heart defects

Publication History

Article published online:
14 September 2021

• Literatur

• 1 Neidenbach R, Kaemmerer H, Pieper L. et al. [Striking Supply Gap in Adults with Congenital Heart Disease?]. Dtsch Med Wochenschr 2017; 142 (04) 301-303
• 2 Neidenbach R, Achenbach S, Andonian C. et al. [Medical care of adults with congenital heart diseases: Present and future]. Herz 2019; 44 (06) 553-572
• 3 Seidel L, Nebel K, Achenbach S. et al. Facts about the General Medical Care of Adults with Congenital Heart Defects: Experience of a Tertiary Care Center. J Clin Med 2020; 9 (06) DOI: 10.3390/jcm9061943.
• 4 Neidenbach R, Achenbach S, Andonian C. et al. Systematic Assessment of Health Care Perception in Adults with Congenital Heart Disease in Germany. CDT-Journal 2021; 11 (02) 481-491
• 5 Deutsche Herzstiftung e.V. Deutscher Herzbericht 2019. Im Internet: (Stand: 12.06.2021) https://www.herzstiftung.de/system/files/2020-11/DHB19_Herzbericht_2019.pdf
• 6 Baumgartner H, De Backer J. The ESC Clinical Practice Guidelines for the Management of Adult Congenital Heart Disease 2020. Eur Heart J 2020; 41 (43) 4153-4154
• 7 Perloff JK, Warnes CA. Challenges posed by adults with repaired congenital heart disease. Circulation 2001; 103 (21) 2637-2643
• 8 Stout KK, Daniels CJ, Aboulhosn JA. et al. 2018 AHA/ACC Guideline for the Management of Adults With Congenital Heart Disease: Executive Summary. Circulation 2018; e698-e800
• 9 Budts W, Roos-Hesselink J, Radle-Hurst T. et al. Treatment of heart failure in adult congenital heart disease: a position paper of the Working Group of Grown-Up Congenital Heart Disease and the Heart Failure Association of the European Society of Cardiology. Eur Heart J 2016; 37 (18) 1419-1427
• 10 Neidenbach R, Niwa K, Oto O. et al. Improving medical care and prevention in adults with congenital heart disease-reflections on a global problem-part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia. Cardiovasc Diagn Ther 2018; 8 (06) 705-715
• 11 Aboulhosn J, Child JS. The adult with a Fontan operation. Curr Cardiol Rep 2007; 9 (04) 331-335
• 12 Kaemmerer H, Apitz C, Brockmeier K. et al. Pulmonary hypertension in adults with congenital heart disease: Updated recommendations from the Cologne Consensus Conference 2018. Int J Cardiol 2018; 272S: 79-88
• 13 Kaemmerer H, Gorenflo M, Huscher D. et al. Pulmonary Hypertension in Adults with Congenital Heart Disease: Real-World Data from the International COMPERA-CHD Registry. J Clin Med 2020; 9 (05) DOI: 10.3390/jcm9051456.
• 14 Neidenbach R, Niwa K, Oto O. et al. Improving medical care and prevention in adults with congenital heart disease-reflections on a global problem-part II: infective endocarditis, pulmonary hypertension, pulmonary arterial hypertension and aortopathy. Cardiovasc Diagn Ther 2018; 8 (06) 716-724
• 15 Albes JM. Current practice in prophylaxis of endocarditis: are we running into trouble?. Eur J Cardiothorac Surg 2019; 56 (01) 1-6
• 16 Niwa K, Kaemmerer H. Aortopathy. Niwa K, Kaemmerer H, editors. Tokyo: Springer Japan; 2017
• 17 von Kodolitsch Y, Rybczynski M, Vogler M. et al. The role of the multidisciplinary health care team in the management of patients with Marfan syndrome. Journal of multidisciplinary healthcare 2016; 9: 587
• 18 Neidenbach RC, Lummert E, Vigl M. et al. Non-cardiac comorbidities in adults with inherited and congenital heart disease: report from a single center experience of more than 800 consecutive patients. Cardiovasc Diagn Ther 2018; 8 (04) 423-431
• 19 Singh S, Desai R, Fong HK. et al. Extra-cardiac comorbidities or complications in adults with congenital heart disease: a nationwide inpatient experience in the United States. Cardiovasc Diagn Ther 2018; 8 (06) 814-819
• 20 Andonian C, Beckmann J, Biber S. et al. Current research status on the psychological situation of adults with congenital heart disease. Cardiovasc Diagn Ther 2018; 8 (06) 799-804
• 21 Andonian C, Langer F, Beckmann J. et al. Overweight and obesity: an emerging problem in patients with congenital heart disease. Cardiovasc Diagn Ther 2019; 9 (Suppl. 02) S360-S368