von Scheidt Fabian, Barth Juliane, Ewert Peter, Freiberger Annika, Kaemmerer Harald
Internationales Zentrum für Erwachsene mit angeborenen Herzfehlern, Klinik für Angeborene Herzfehler und Kinderkardiologie, Deutsches Herzzentrum München, TUM Universitätsklinikum, Lazarettstr. 36, 80636, München, Deutschland.
Kinderkardiologie, Klinik für Kinder- und Jugendmedizin, Universitätsklinikum Augsburg, Augsburg, Deutschland.
Inn Med (Heidelb). 2025 May 19. doi: 10.1007/s00108-025-01923-3.
Congenital heart defects are the most common singular congenital organ malformation. Due to advances in medical care, more than 95% of affected persons now reach adulthood. However, congenital heart defects are often associated with residuals or sequelae that require lifelong specialized care. Lack of or irregular follow-up care leads to worse outcomes. Nevertheless, follow-up care for adults with congenital heart disease (ACHD) is still often inconsistent in reality, and many patients receive care outside of qualified structures.The transition process-the shift from pediatric to adult medical care-is critical. Many affected individuals experience little to no subjective limitations at this stage. Nevertheless, they must gradually take responsibility for their health while adapting to an unfamiliar healthcare provider.A structured transition process aims to improve continuity of care, promote disease acceptance, and prevent gaps in medical care. Both, patients and their primary care providers must be well-informed and aware of specialized care structures. Interdisciplinary collaboration among primary care providers, pediatric and ACHD specialists, and adult cardiologists is essential and should be supported by transition programs or patient organizations.Failure in the transition process primarily puts at risk the health of affected individuals but can also unnecessarily strain the healthcare system. A successful transition and a comprehensive, specialized care network are key to sustainably improving the prognosis of ACHD patients.
先天性心脏缺陷是最常见的单一先天性器官畸形。由于医疗护理的进步,现在超过95%的患者能够成年。然而,先天性心脏缺陷常常伴有需要终身专业护理的残留问题或后遗症。缺乏或不规律的后续护理会导致更差的结果。尽管如此,先天性心脏病成年患者(ACHD)的后续护理在现实中往往仍然不一致,许多患者在合格机构之外接受护理。
过渡过程——从儿科医疗护理向成人医疗护理的转变——至关重要。许多受影响的个体在这个阶段几乎没有主观限制。然而,他们必须在适应不熟悉的医疗服务提供者的同时,逐渐对自己的健康负责。
结构化的过渡过程旨在改善护理的连续性,促进对疾病的接受,并防止医疗护理出现缺口。患者及其初级保健提供者都必须充分了解并知晓专业护理机构。初级保健提供者、儿科和ACHD专家以及成人心脏病专家之间的跨学科协作至关重要,并且应该得到过渡项目或患者组织的支持。
过渡过程失败主要会使受影响个体的健康面临风险,但也可能不必要地给医疗系统带来压力。成功的过渡和全面、专业的护理网络是可持续改善ACHD患者预后的关键。