Department of Cardiology, University Hospital Basel, Switzerland.
Curr Opin Support Palliat Care. 2011 Sep;5(3):291-6. doi: 10.1097/SPC.0b013e3283492aa3.
Adult survivors with congenital heart disease (CHD) are a novel group of adults with chronic disease. Due to the nature of their surgical repair, the majority is not cured. This review focuses on changing demographics and mortality of adults with CHD, available knowledge and data on end-of-life (EOL) and palliative care in this patient group and outlines needs for future clinical practice and research.
Recent findings underscore that survival to adulthood has become the rule for the majority of patients born with CHD. Many remain at increased risk of premature death from their disease. Chronic circulatory failure has been identified as one of the leading causes of death and, thus, patients may benefit from incorporation of palliative care principles in their management. Recent studies show that this practice has not yet been widely adopted. Nonetheless a survey of adult outpatients has shown that many patients prefer to be involved in EOL decisions early in the course of their disease.
More research is needed to learn how we can best implement principles of palliative care in the growing population of adult survivors with CHD. This includes improved communication about EOL issues and a more comprehensive approach for symptom control.
先天性心脏病（CHD）的成年幸存者是一组新型的慢性病成年人。由于其手术修复的性质，大多数人无法治愈。本综述重点介绍 CHD 成年患者的人口统计学变化和死亡率、临终关怀和姑息治疗的现有知识和数据，并概述了未来临床实践和研究的需求。
最近的发现强调，对于大多数患有 CHD 的患者来说，成年后生存已成为常态。许多人仍然面临因疾病而过早死亡的风险增加。慢性循环衰竭已被确定为导致死亡的主要原因之一，因此，患者可能受益于姑息治疗原则在其治疗中的应用。最近的研究表明，这种做法尚未得到广泛采用。尽管如此，一项对成年门诊患者的调查显示，许多患者希望在疾病早期就参与临终决策。
需要更多的研究来了解我们如何在不断增长的 CHD 成年幸存者人群中最好地实施姑息治疗原则。这包括改善有关临终关怀问题的沟通和更全面的症状控制方法。
