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Sind Erwachsene mit angeborenen Herzfehlern ausreichend versorgt?

Do adults with congenital heart disease receive adequate treatment?

Zusammenfassung

Die Zahl erwachsener Patienten mit angeborenen Herzfehlern (EMAH) wird in Deutschland auf ca. 280.000 geschätzt und ist damit größer als die der Kinder mit angeborenen Herzfehlern (AHF). Kardiovaskuläre Rest- und Folgezustände bei fast allen EMAH erfordern die lebenslange Nachsorge. Trotzdem werden schätzungsweise mehr als 200.000 EMAH nicht von zertifizierten Spezialisten behandelt. Dies ist besonders kritisch, da viele Ärzte der Basisversorgung keine spezifischen Kenntnisse über die Probleme dieser teils sehr komplexen Anomalien haben. Auch können bei vorerst benignen Anomalien mit zunehmendem Patientenalter relevante Probleme auftreten, selbst nach frühzeitig durchgeführter Therapie. Typisches Beispiel ist die pulmonalarterielle Hypertonie bei primären Links-rechts-Shunt-Vitien. Unzureichende Verlaufskontrolle und Nachsorge können sich negativ auf Morbidität und Mortalität der Betroffenen auswirken. Frühzeitige präventive Maßnahmen werden möglicherweise nicht rechtzeitig eingeleitet. Kardiale Hauptprobleme der EMAH betreffen Herzinsuffizienz, -rhythmusstörungen, Endokarditiden und pulmonalvaskuläre Erkrankungen. Mit zunehmendem Alter stellen kardiale oder nichtkardiale Komorbiditäten weitere Probleme dar. Diese manifestieren sich oft anders als bei erworbenen Herzerkrankungen. Dort etablierte Therapieregime lassen sich nicht unbedingt auf AHF übertragen. Treten bei EMAH Probleme neu auf, wenden sie sich zumeist primär an ihren Haus- oder Allgemeinarzt. Trotz überwiegend fehlender spezifischer Kenntnisse zu EMAH stellt dieser die Weichen für die adäquate Diagnostik, Behandlung und prophylaktische Maßnahmen. Daher muss der Hausarzt wissen, welcher (Kinder-) Kardiologe mit entsprechender EMAH-Erfahrung für das gemeinsame Patientenmanagement infrage kommt.

Abstract

The number of adults with congenital heart disease (CHD) in Germany is currently estimated to be approximately 280,000, which is higher than the number of children with CHD. Nearly all grown-ups with congenital heart defects (GUCH) have residual complaints and sequelae that require a life-long follow-up. It is estimated that more than 200,000 GUCH are not treated in a certified CHD center and not seen by a certified specialist. According to general experience, many physicians do not have specific knowledge concerning the problems of complex heart abnormalities and comorbidities. Moreover, current data show that even in anomalies which have long been considered as benign age-related problems may occur even despite surgical or interventional therapy early in life. The development of pulmonary arterial hypertension in primary left-right shunt anomalies is a typical example. An inadequate follow-up care in patients with CHD has negative effects on morbidity and mortality. Furthermore, the possibility of early preventive measures was probably not initiated in a timely manner. The main cardiac problems of GUCH are heart failure, cardiac arrhythmia, endocarditis and pulmonary vascular disease. With increasing age, additional problems concerning cardiac and non-cardiac comorbidities become increasingly more important. In GUCH therapy has to be adapted to the individual patient and cannot be transferred from treatment methods for acquired heart disease. When cardiac or non-cardiac problems arise, GUCH primarily contact a general practitioner. The primary caregivers are responsible for guiding patients along the appropriate way and to provide adequate treatment, which has to start as early as possible.

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Danksagung

Die Autoren danken der Fa. Actelion Pharmaceuticals Deutschland GmbH für die gewährte uneingeschränkte Forschungszuwendung („unrestricted educational grant“) sowie der Deutschen Herzstiftung für die Förderung der EMAH-Forschung.

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R. Neidenbach erhielt Forschungszuwendungen („unrestricted educational grant“) von der Fa. Actelion Pharmaceuticals Deutschland GmbH. H. Kaemmerer erhielt innerhalb der letzten 3 Jahre Honorare und/oder Reisekostenerstattungen für Beratertätigkeiten und/oder Vorträge von folgenden Firmen: Actelion, Pfizer, Bayer. J. Schelling, L. Pieper, L. Sanftenberg, R. Oberhoffer, F. de Haan, M. Weyand, C. Schlensak, D. Lossnitzer, N. Nagdyman, Y. von Kodolitsch, H.C. Kallfelz, P. C. Helm, U.M.M. Bauer, P. Ewert und T. Meinertz geben an, dass kein Interessenkonflikt besteht.

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Neidenbach, R., Schelling, J., Pieper, L. et al. Sind Erwachsene mit angeborenen Herzfehlern ausreichend versorgt?. Z Herz- Thorax- Gefäßchir 31, 228–240 (2017). https://doi.org/10.1007/s00398-016-0134-x

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Schlüsselwörter

  • Herzinsuffizienz
  • Endokarditis, bakterielle
  • Pulmonale Hypertonie
  • Primärversorgung
  • EMAH
  • ACHD

Keywords

  • Heart failure
  • Endocarditis, bacterial
  • Pulmonary hypertension
  • Primary care
  • EMAH
  • ACHD