The End-of-Life Experience for a Cohort of Patients with Pulmonary Arterial Hypertension
The End-of-Life Experience for a Cohort of Patients with Pulmonary Arterial Hypertension
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DOI：
10.1089/jpm.2012.0085
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发表时间：
2012-10-01
影响因子：
2.8
通讯作者：
Smith, Tom
中科院分区：
文献类型：
--
作者：
Grinnan, Daniel C.;Swetz, Keith Mark;Smith, Tom
前言：肺动脉高压(PAH)是一种进行性的、最终致命的肺循环疾病。从来没有关于PAH患者临终症状的调查。在这项调查中，我们调查了最近死于PAH的代孕母亲。我们评估他们的反应，以更好地了解PAH患者的临终经历。方法：调查工具包括人口统计学信息和Edmonton症状评估量表。Accredo Treeutics将调查问卷邮寄给最近死亡的PAH患者的代理人，并将回复匿名返回给弗吉尼亚联邦大学的研究人员，用于我们的描述性分析。结果：在分布于24个月(2009年2月至2011年2月)的100项调查中，我们获得了36份回复(应答率36%)。我们发现，大多数患者的死亡(90%)与PAH有关，大多数患者死于医院(67%)，大多数住院死亡(83%)发生在重症监护病房。姑息治疗很少涉及患者的护理，许多代孕母亲不知道死者可以获得姑息治疗和临终关怀服务。结论：在这一队列中，PAH患者通常死于他们的疾病，通常在症状负担较高的医院环境中死亡。还需要进一步的研究来证实这项研究的结果，并更好地理解导致这项调查中发现的趋势的因素。
Introduction: Pulmonary arterial hypertension (PAH) is a progressive and ultimately fatal disease of the pulmonary circulation. There has never been an investigation of the end-of-life symptoms in patients with PAH. In this investigation, we surveyed surrogates of recent decedents with PAH. We evaluate their responses to better understand the end-of-life experience of patients with PAH.Methods: The survey instrument includes demographic information and the Edmonton Symptoms Assessment Scale. Accredo Therapeutics mailed the survey to surrogates of recent decedents with PAH, and responses were anonymously returned to investigators at Virginia Commonwealth University and used in our descriptive analysis.Results: Of 100 surveys distributed over 24 months (February 2009 to February 2011), we obtained 36 responses (response rate 36%). We found that most patient deaths (90%) were related to PAH, that the majority of patients died in the hospital (67%), with the majority of in-hospital deaths (83%) occurring in intensive care. Palliative care was infrequently involved in patients' care, and many surrogates were unaware of palliative care and hospice services available to the decedents. Patients died with a high symptom burden, especially dyspnea.Conclusion: In this cohort, patients with PAH usually died from their disease, often in the hospital setting with a high symptom burden. Further study will be needed to confirm the findings from this study and to better understand the forces leading to the trends uncovered in this investigation.