THE CHRONICALLY ILL--LONG TERM MECHANICAL VENTILATION

“慢性危重病患者”是一个仅在过去十年中才被认为是一个独特群体的人群（Daly等人，1991年;吉拉德和拉芬，1985年）。这些患者由于原发病的并发症或原有慢性病的恶化而经历长时间的危重疾病，并且由于普遍需要长时间的机械通气，因此也被归类为“长期呼吸机患者”。以前的研究记录了巨大的年度成本，估计全国为186亿美元（Goins等人，1991年）。尽管进行了这些投资，但住院患者的死亡率仍保持在30-50%（Daly等，1991; Cohen & Booth，1994）。虽然我们之前已经证明，对于这一人群，“特殊护理病房”的可用性可以降低住院患者的费用并改善临床结局（道格拉斯，Daly等，1996; Rudy，Daly，道格拉斯等，1995），但直到最近才注意到能够脱离呼吸机并出院的患者的持续护理需求。现在有足够的证据表明，即使在出院后，慢性危重病患者仍然需要密集的资源，但结果非常差。目前的项目旨在将特护病房的那些功能扩展到出院后的前两个月，这些功能已被证明在住院期间有效降低成本和改善结果。这是第一项针对这部分ICU人群进行门诊干预的研究。干预将包括一个疾病管理计划，由一个高级实践护士（APN），肺病学家和老年病学家团队实施。本研究将探讨以下问题：（1）参加疾病管理计划的慢性危重病患者与未参加疾病管理计划的慢性危重病患者在出院后的前2个月内在相对资源使用方面是否存在差异？(2)参加疾病管理项目的慢性危重病患者与未参加疾病管理项目的慢性危重病患者在出院后前2个月的生活质量、死亡率和再住院率方面是否存在差异？(3)参加疾病管理计划的慢性危重病患者与那些在出院后的前两个月内对护理不满意的患者之间是否存在差异？(4)参加疾病管理计画之慢性危重症病患家属与未参加疾病管理计画之慢性危重症病患家属在照护负担与忧郁情绪上是否有差异？

The "chronically-critically ill" are a population that has been recognized as a distinct group only for the past decade (Daly et al, 1991; Girard & Raffin, 1985). These patients experience a prolonged period of critical illness, due either to complications of their primary illness or exacerbation of pre-existing chronic diseases and have also been categorized as "long-term ventilator patients" because of the universal requirement for lengthy periods of mechanical ventilation. Previous research has documented enormous yearly costs, estimated at $18.6 billion nationally (Goins, et al, 1991). Despite this investment, in-patient mortality rates remain at 30-50% (Daly et al, 1991; Cohen & Booth, 1994). While we have previously demonstrated that the availability of a "Special Care Unit," for this population, can reduce in-patient costs and improve clinical outcomes (Douglas, Daly et al, 1996; Rudy, Daly, Douglas et al, 1995), until recently there has been no attention paid to continuing care needs of patients who are able to wean from the ventilator and be discharged from the hospital. There is now sufficient evidence that, even after discharge, chronically critically ill patients continue to require intensive resources but experience very poor outcomes The current project designed to extend those features of the Special Care Unit that were shown to be effective in reducing costs and improving outcomes during hospitalization to the first two months of the post- discharge period. It is the first study to test an out-patient intervention for this segment of the ICU population. The intervention will consist of a disease-management program, implemented by a team of Advanced Practice Nurses (APN), pulmonologist, and geriatrician. The following research questions will be investigated: (1)Are there differences between chronically critically ill patients who participate in a disease management program and those who do not in relative resource use in the first 2 months post-discharge? (2) Are there differences between chronically critically ill patients who participate in a disease management program and those who do not in quality of life, mortality, and rehospitalization in the first 2 months post-discharge? (3) Are there differences between chronically critically ill patients who participate in a disease management program and those who do not in satisfaction with care in the first two months post-discharge? (4) Are there differences between family members of chronically critically ill patients who participate in a disease management program and family members of those who do not in care-giving burden and depression?