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MEDICAL GOALS IN DEMENTIA: ETHICS & QUALITY OF LIFE

痴呆症的医疗目标：伦理

基本信息

批准号：
6937661
负责人：
PETER John WHITEHOUSE
金额：
$ 37.75万
依托单位：
CASE WESTERN RESERVE UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2001
资助国家：
美国
起止时间：
2001-09-30 至 2007-08-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/6937661
关键词：
Alzheimer&apos s disease attitude behavioral /social science research tag caregivers clinical research decision making dementia ethics health care personnel health surveys human subject language memory mental disorder chemotherapy neuropsychology performance quality of life

项目摘要

The enormous international scope of the problem of dementia combined with exciting discoveries in neurosciences is leading to new hope and urgency in the treatment of Alzheimer's disease and related conditions. Little discussion in either the lay or the academic literature has focused on the practical or conceptual issues surrounding the establishment of therapeutic goals in these disorders. New efforts based in the principal of discourse ethics have begun to explore the kinds of ethical issues and value conflicts faced by patients with dementia, caregivers, and professionals. These approaches have led us to recognize the complexities that are faced in the actual caregiving situation. National and international efforts are underway to design therapies to improve both the cognitive and behavioral symptoms as well as to slow the progression of disease. In this proposal, we will use a variety of methods to explore the establishment of therapeutic goals in dementia. We will expand on our national recognized work to develop focus groups of affected persons, their caregivers, and health care professionals. These focus groups will be complemented by surveys designed to collect data about the attitudes of broader populations of caregivers and patients. In our initial focus groups, improvement of quality of life has consistently emerged as a key concept yet there has been little work done to assess quality of life in intervention studies. We will further develop two instruments designed by Meryl Brod and Rebecca Logsdon and colleagues to assess quality of life. We will examine the relationship between performance on these quality of life instruments and other neuropsychological abilities, including memory, language, executive function and insight. Finally, we will compare methods of establishing utility weights in both patients and caregivers, including time tradeoff, standard gamble and rating scales. The integrating theme behind these efforts is that further exploration of therapeutic goals in dementia is required and that a variety of techniques may allow us to understand better the needs and desires of those families affected by these conditions. In the final years of the proposal we will develop interventions based on the knowledge accumulated during the initial periods of the grant to enhance the decision- making of other caregiving units.

痴呆症问题的巨大国际范围与神经科学中令人兴奋的发现相结合，导致阿尔茨海默病和相关病症治疗的新希望和紧迫性。在外行或学术文献中很少有讨论集中在围绕这些疾病的治疗目标的建立的实际或概念问题上。基于话语伦理学原则的新努力已经开始探索痴呆症患者、护理人员和专业人员所面临的各种伦理问题和价值冲突。这些方法使我们认识到在实际工作中所面临的复杂情况。国家和国际上正在努力设计治疗方法，以改善认知和行为症状，并减缓疾病的进展。在这个提案中，我们将使用多种方法来探索痴呆症治疗目标的建立。我们将扩大我们的国家认可的工作，发展受影响的人，他们的照顾者和卫生保健专业人员的重点群体。这些重点小组将辅之以调查，以收集更多的护理人员和病人的态度数据。在我们最初的焦点小组中，生活质量的改善一直是一个关键概念，但在干预研究中评估生活质量的工作很少。我们将进一步开发由Meryl Brod和Rebecca Logsdon及其同事设计的两种工具来评估生活质量。我们将研究这些生活质量工具的表现与其他神经心理学能力之间的关系，包括记忆，语言，执行功能和洞察力。最后，我们将比较建立效用权重的方法，在病人和照顾者，包括时间权衡，标准赌博和评级量表。这些努力背后的综合主题是，需要进一步探索痴呆症的治疗目标，各种技术可以让我们更好地了解受这些条件影响的家庭的需求和愿望。在提案的最后几年，我们将根据赠款初期积累的知识制定干预措施，以加强其他资助单位的决策。