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中文摘要
翻译
晚期癌症患者继续接受积极的治疗(新的化疗、静脉注射 化疗,重症监护病房),尽管没有证据表明这种临终关怀(EOL)是 与更好的结果相关。最近的研究表明,在全球范围内化疗使用率的上升 生命的最后30天与较差的结局有关,例如较少的临终关怀日和较低质量的EOL护理。 这些不良的结果,加上与这种治疗相关的增加的症状负担通常 导致患者在EOL的财务和个人成本。太多晚期癌症患者死于- 远离家人的医院和有意义的支持,这对高质量的EOL护理至关重要。 对于这些患者来说,做出决定是困难的,尤其是决定是否以及何时过渡。 以舒适为导向的护理目标。这一决定需要了解复杂的医疗信息和 与医疗团队沟通的细微差别。为了努力了解影响 在EOL的积极治疗决定,研究只集中在复杂的现象的一个方面 决策--无论是MD的输入还是患者的决定。然而,这并不能反映出“真实生活”的决策 临床环境。如果我们要了解EOL积极治疗决定所涉及的细微差别,我们 需要对如何有效地整合制造过程中涉及的复杂过程进行重大的重新概念化 这些艰难的治疗和护理决定。我们必须做到这一点,以便 对这些脆弱的患者进行必要的姑息和生命周期护理。 这项拟议的研究将是第一次应用复杂性科学的原理来检查这些过程 这导致了对以下疾病的终生治疗决策(从最大限度地延长生存期到最大限度地提高生活质量) 接受高级护理的患者。研究问题是:(1)终生关怀的攻击性是如何影响的 随着时间的推移,护理重点(肿瘤学家、患者和二人组)如何?(2)护理重点(肿瘤学家、患者、 和DYAD)受临床诱因、EOL偏好和治疗效果评估的影响 时间?;(3)EOL偏好、临床诱因和 随时间推移的护理重点(肿瘤学家、患者);(4)EOL偏好是否受治疗评估的影响 随时间推移的有效性?(5)EOL偏好是否受特征(肿瘤学家、患者)的影响? 这种检查EOL决策中复杂过程的新方法的结果可以提供 允许为晚期患者设计和测试量身定做的支持策略的信息 癌症。除了临床应用,如果能够开发出新的策略,可以提供有意义的 支持这些患者和他们的照顾者,然后潜在地促进关于EOL的有意义的决定 护理,并有可能减少使用无效的侵略性治疗对个人和财务的影响 不仅会让患者受益,也会让社会受益。
英文摘要
Patients with advanced cancer continue to receive aggressive care (new chemotherapy, intravenous chemotherapy, intensive care unit stays) despite the absence of evidence that such care at end of life (EOL) is associated with better outcomes. Recent research has shown that the rise in use of chemotherapy within the last 30 days of life is associated with poor outcomes such as few hospice days and lower quality EOL care. These poor outcomes, coupled with the increased symptom burden associated with such treatments often leads to financial and personal costs for patients at the EOL. Too many patients with advanced cancer die in- hospital away from family and meaningful supports that are essential for quality EOL care. Decision making for these patients is difficult-especially the decision whether or not and when to transition to a goal of comfort-orient care. This decision requires understanding of complex medical information and nuances in communication with the healthcare team. In an effort to understand factors that influence aggressive treatment decisions at EOL, research has focused on only one side of the complex phenomena of decision making--either MD input or patient decision. Yet this is not reflective of "real life" decision making in the clinical setting. If we are to understand the nuances involved in aggressive treatment decisions at EOL, we need a major re-conceptualization in how to effectively incorporate the complex processes involved in making these difficult treatment and care decisions. This must be accomplished if we are to facilitate provision of essential palliative and EOL care to these vulnerable patients. The proposed study will be the first to apply the principles of complexity science in examining the processes that lead to EOL treatment decisions (ranging from maximizing survival to maximizing quality of life) for patients with advanced care. The research questions are: (1) How is aggressiveness of EOL care influenced by the focus of care (oncologist, patient, and dyad) over time?; (2) How is focus of care (oncologist, patient, and dyad) influenced by clinical triggers, EOL preferences, and evaluation of treatment effectiveness over time?; (3) How is evaluation of treatment effectiveness influenced by EOL preferences, clinical triggers, and focus of care (oncologist, patient) over time?; (4) Are EOL preferences influenced by evaluation of treatment effectiveness over time?; (5) Are EOL preferences influenced by characteristics (oncologist, patient)? The results of this novel approach to examining complex processes in EOL decision making can provide information that will allow the design and testing of tailored support strategies for patients with advanced cancer. In addition to clinical application, if new strategies can be developed that can provide meaningful support to these patients and their caregivers, then the potential to facilitate meaningful decisions about EOL care and to potentially reduce the personal and financial impact of the use of ineffective aggressive treatments will benefit not only patients but society as well.
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Improving Understanding of Quality End of Life Care Using a Dyadic Approach
  • 批准号:
    10735211
  • 项目类别:
  • 资助金额:
    $69.25万
  • 财政年份:
    2023
  • 负责人:
    Sara L. Douglas
  • 依托单位:
CLOSER_A Videoconference Intervention for Distance Caregivers
  • 批准号:
    9234065
  • 项目类别:
  • 资助金额:
    $60.1万
  • 财政年份:
    2016
  • 负责人:
    Sara L. Douglas
  • 依托单位:
海外基金