Steiner Jill M, Kirkpatrick James N, Heckbert Susan R, Sibley James, Fausto James A, Engelberg Ruth A, Randall Curtis J
Division of Cardiology, School of Medicine, University of Washington, Seattle, Washington.
Department of Epidemiology, School of Public Health, University of Washington, Seattle, Washington.
Congenit Heart Dis. 2018 Sep;13(5):721-727. doi: 10.1111/chd.12638. Epub 2018 Sep 19.
Overall health care resource utilization by adults with congenital heart disease has increased dramatically in the past two decades, yet little is known about utilization patterns at the end of life. The objective of this study is to better understand the patterns and influences on end-of-life care intensity for adults with congenital heart disease.
We identified a sample of adults with congenital heart disease (n = 65), cancer (n = 10 784), or heart failure (n = 3809) who died between January 2010 and December 2015, cared for in one multi-hospital health care system. We used multivariate analysis to evaluate markers of resource utilization, location of death, and documentation of advance care planning among patients with congenital heart disease versus those with cancer and those with heart failure.
Approximately 40% of adults with congenital heart disease experienced inpatient and intensive care unit (ICU) hospitalizations in the last 30 days of life; 64% died in the hospital. Compared to patients with cancer, patients with adult congenital heart disease (ACHD) were more likely to have inpatient (adjusted risk ratio 1.57; 95% CI 1.12-2.18) and ICU admissions in the last 30 days of life (adjusted risk ratio 2.56; 95% CI 1.83-3.61), more likely to die in the hospital (adjusted risk ratio 1.75; 95% CI 1.43-2.13), and more likely to have documentation of advance care planning (adjusted risk ratio 1.46; 95% CI 1.09-1.96). Compared to patients with heart failure (HF), patients with ACHD were less likely to have an ICU admission in the last 30 days of life (adjusted risk ratio 0.73; 95% CI 0.54-0.99).
Adults with congenital heart disease have significant hospital resource utilization near the end of life compared to patients with cancer, notable for more hospitalizations and a higher likelihood of death in the hospital. This population represents an important opportunity for the application of palliative and supportive care.
在过去二十年中，成年先天性心脏病患者的整体医疗资源利用率急剧上升，但对于临终时的利用模式却知之甚少。本研究的目的是更好地了解成年先天性心脏病患者临终护理强度的模式及其影响因素。
我们确定了一个样本，其中包括2010年1月至2015年12月期间在一个多医院医疗系统接受治疗并死亡的成年先天性心脏病患者（n = 65）、癌症患者（n = 10784）或心力衰竭患者（n = 3809）。我们使用多变量分析来评估先天性心脏病患者与癌症患者和心力衰竭患者之间资源利用的指标、死亡地点以及预先护理计划的记录情况。
约40%的成年先天性心脏病患者在生命的最后30天内有住院和重症监护病房（ICU）住院治疗；64%在医院死亡。与癌症患者相比，成年先天性心脏病（ACHD）患者在生命的最后30天内更有可能住院（调整风险比1.57；95%CI 1.12 - 2.18）和入住ICU（调整风险比2.56；95%CI 1.83 - 3.61），更有可能在医院死亡（调整风险比1.75；95%CI 1.43 - 2.13），并且更有可能有预先护理计划的记录（调整风险比1.46；95%CI 1.09 - 1.96）。与心力衰竭（HF）患者相比，ACHD患者在生命的最后30天内入住ICU的可能性较小（调整风险比0.73；95%CI 0.54 - 0.99）。
与癌症患者相比，成年先天性心脏病患者在临终时医院资源利用率较高，其特点是住院次数更多且在医院死亡的可能性更高。这一人群是应用姑息治疗和支持性护理的重要机会。
