背景:寿命终止(EOL)状态,包括死亡年龄和治疗细节,成人先天性心脏病(ACHD)患者的数量尚不清楚。这项研究使用全国性的日本数据库调查了ACHD患者的EOL状况。方法和结果:26,438例年龄≥15岁的ACHD患者的最后一次住院数据,2013年至2017年期间承认,包括在内。疾病复杂性(简单,中度,或伟大)使用国际疾病分类进行分类,第十次修订代码。853人死亡,对831例具有可分类疾病复杂性的患者进行了EOL状态评估。简单患者的中位死亡年龄,中度,大疾病复杂性组分别为77.0年、66.5年和39.0年,分别。在死前对患者进行简单的治疗,中度,复杂组包括心肺复苏(30.1%,35.7%,和41.9%,分别),经皮心肺支持(7.2%,16.5%,和16.3%,分别),和机械通气(58.7%,72.2%,75.6%,分别)。总的来说,70%的病人在专业机构之外死亡,住院≥31天后>25%死亡。
结论:全国数据表明,患有ACHD的患者在较年轻的年龄死亡,并且在死亡前接受了更多的侵入性治疗,许多人在住院≥1个月后死亡。在适当的时间与患者讨论EOL选项很重要,特别是对于疾病复杂性较高的患者。
BACKGROUND: The end-of-life (EOL) status, including age at death and treatment details, of patients with adult congenital heart disease (ACHD) remains unclear. This
study investigated the EOL status of patients with ACHD using a nationwide Japanese database.Methods and Results: Data on the last hospitalization of 26,438 patients with ACHD aged ≥15 years, admitted between 2013 and 2017, were included. Disease complexity (simple, moderate, or great) was classified using International Classification of Diseases, 10th Revision codes. Of the 853 deaths, 831 patients with classifiable disease complexity were evaluated for EOL status. The median age at death of patients in the simple, moderate, and great disease complexity groups was 77.0, 66.5, and 39.0 years , respectively. The treatments administered before death to patients in the simple, moderate, and great complexity groups included cardiopulmonary resuscitation (30.1%, 35.7%, and 41.9%, respectively), percutaneous cardiopulmonary support (7.2%, 16.5%, and 16.3%, respectively), and mechanical ventilation (58.7%, 72.2%, and 75.6%, respectively). Overall, 70% of patients died outside of specialized facilities, with >25% dying after ≥31 days of hospitalization.
CONCLUSIONS: Nationwide data showed that patients with ACHD with greater disease complexity died at a younger age and underwent more invasive treatments before death, with many dying after ≥1 month of hospitalization. Discussing EOL options with patients at the appropriate time is important, particularly for patients with greater disease complexity.