Evidence Based Encounter Decision Aid for Elderly Patients to Promote Shared Decision Making on Treatment Choice in End Stage Renal Disease

摘要 研究 晚年达到终末期肾病(ESRD)的患者越来越多地被安排进行血液透析 (HD)没有感觉到他们曾经被给予治疗选项的选择。一种道德上的当务之急 自1997年以来，每个人都导致八旬和非老年人群的HD年龄调整后增加了57%。 2003年。大多数患者报告说，他们没有任何选择，只能开始透析。尽管不断增长 认识到这一未能尊重患者的自主性，人们对患者如何在 终末期肾病的治疗选择或决策辅助(DA)是否可以改善这种情况。检察官已经被证明是 使患者能够做出与他们的价值观和护理目标一致的选择。DAS还增加了患者数量 参与决策，并对患者与提供者的沟通产生积极影响。我们假设 一个简单的就诊DA，显示ESRD治疗方案的个性化风险和收益估计，将 促进共同决策，帮助患者选择与他们的价值观和 偏好，增加他们的自主性。在这项研究中，我们建议： 通过以下方式增强老年终末期肾病患者的尊严、自主性和生活质量 1)通过决策辅助工具改进风险预测及其关注点转换 2)批判性地评估围绕当前透析支付改革的伦理和经济紧张局势 维护患者的自主权和获得护理的机会，并为未来的卫生政策提供信息。 这一项目的成功完成有可能影响成千上万面临着 通过广泛的传播和政策影响，美国每年都会做出这些艰难的决定。 侯选人 在这些挑战中，Thorsteinsdottir博士对医疗保健和资源分配中的正义充满热情 人口老龄化的时代。她为这些任务带来了独特的教育和经验的结合。她是董事会成员 在普通内科医学和姑息治疗方面获得认证，并在哈佛大学完成了生物伦理学奖学金 医学院。她还在不同的医疗保健系统中的许多不同的医疗保健环境中执业。 通过实现这些目标，Thorsteinsdottir博士将把自己的独立定位为老龄化的结果 研究员。她的总体目标是成为一名独立资助的研究人员和在 老年结局研究：为此，她的目标是 1.提高老年人的观测数据分析技能：因为缺乏 关于虚弱老年人的随机数据和招募进入此类试验的内在挑战，至关重要的是 能够浏览大型观察性登记，以确定治疗的风险和好处 非常古老。这一领域的正式发展将使Thorsteinsdottir博士未来与 通过已建立的机构合作，如高级委员会，与国家和国际同事进行合作 Value Health Care财团和瑞典卡罗林斯卡大学以及NIH资助的AGEs研究 她的祖国冰岛。 2.提高定性研究技术的技能：能够制定干预措施以提高 在决策过程中，Thorsteinsdottir医生需要清楚地了解患者的价值， 家庭/照顾者和临床医生。定性研究对于理解这些价值观和 进一步促进她的事业发展。 3.掌握旨在促进将风险预测转化为护理点干预措施的技能。 Thorsteinsdottir博士计划为面临透析决定的患者设计一种决策辅助工具。去做 为此，她需要在共享决策的基本理论和技能方面打下坚实的基础。 K奖将使她能够继续寻求关于 老年虚弱患者透析的个体化风险-收益平衡。这将使她能够继续 培训应用流行病学方法、卫生经济学和共同决策以及 定性和翻译方法，并与该领域的研究人员建立联系 未来R01提案中的传播和实施工作 导师制与制度环境 我们已经组建了一支由NIH资助的知识领域专家组成的强大的本地指导团队 综合、共同决策、伦理和卫生经济学以及老年病学、虚弱和痴呆症 将指导Thorsteinsdottir博士完成拟议的研究和培训。为了壮大这支队伍，我们有 组建了一个由国家认可的顾问组成的小组来监督我在职业发展过程中的进展 在他们的专业领域内规划并提供指导和联系。 这项研究将在梅奥诊所进行，这是一家领先的研究机构，拥有广泛的 流行病学、卫生服务和转化研究资源，将增强Thorsteinsdottir博士的 实现她雄心勃勃的目标的机会。

Abstract Research Patients who reach end stage renal disease (ESRD) late in life are increasingly being placed on hemodialysis (HD) without feeling they have ever been given a choice of treatment options. A moral imperative to treat everyone has resulted in a 57% age adjusted increase in HD among octa- and nonagenarians from 1997- 2003. Most patients report they were not presented with any options but to start dialysis. Despite growing recognition of this failure to respect patients' autonomy, little is known about how patients chose between ESRD treatment options or whether decision aids (DA) can improve the situation. DAs have been shown to empower patients to make choices consistent with their values and goals of care. DAs also increased patient participation in decision making and positively impacted patient-provider communication. We hypothesize that a simple in-visit DA that shows individualized risk and benefit estimates of treatment options for ESRD will facilitate shared decision making and help patients choose the treatment consistent with their values and preferences, increasing their autonomy. In this study we propose: To bolster the dignity, autonomy, and quality of life of elderly patients with ESRD by 1) Improving risk prediction and its point of care translation through a decision aid 2) Critically assessing the ethical and economic tensions surrounding the current payment reform in dialysis to safeguard patient autonomy and access to care and to inform future health policy. Successful completion of this project has the potential to affect the lives of thousands of elderly patients facing these difficult decisions annually in the US, through wide dissemination and policy implications. Candidate Dr. Thorsteinsdottir is passionate about justice in health care and resource allocation during these challenging times of aging populations. She brings to these tasks a unique mix of education and experiences. She is board certified in general internal medicine and palliative care and has completed a fellowship in bioethics at Harvard Medical School. She also has practiced in many different health care settings in different health care systems. By undertaking these aims Dr. Thorsteinsdottir will position herself for independence as an aging outcomes researcher. Her overall goal is to become an independently funded researcher and a national leader in geriatric outcomes research: To this end her objectives are 1. Improve skills in observational data analysis in older adult populations: Because of the paucity of randomized data on the frail elderly and inherent challenges with recruiting into such trials, it is essential to be able to navigate large observational registries to determine the risks and benefits of therapies for the very old. Formal development in this area will position Dr. Thorsteinsdottir for future collaborations with national as well as international colleagues through established institutional collaborations such as the High Value Health Care consortium and Karolinska University in Sweden as well the NIH funded AGES study in her native Iceland. 2. Improve skills in qualitative research techniques: To be able to develop interventions to improve decision making, Dr. Thorsteinsdottir will need a clear understanding of the values of patients, families/caregivers and clinicians. Qualitative research is essential to understand these values and to further her career development. 3. Acquire skills designed to facilitate translation of risk prediction into point of care interventions. Dr. Thorsteinsdottir plans to design a decision aid for patients confronted with a decision to dialyze. To do this she needs a solid foundation in the essential theories and skills of shared decision making. The K award would allow her to continue to seek answers to important questions regarding the individualized risk-benefit balance for dialysis in the frail elderly patients. It would allow her to pursue training in applied epidemiological methods, health economics and shared-decision making as well as qualitative and translational methodology and to forge links with researchers in the field for collaborative dissemination and implementation work in a future R01 proposal Mentorship and Institutional environment We have assembled a strong local mentorship team of NIH funded experts in the fields of knowledge synthesis, shared decision making, ethics and health economics as well as geriatrics, frailty and dementia that will guide Dr. Thorsteinsdottir through the proposed research and training. To augment this team, we have assembled a panel of nationally recognized advisors to monitor my progress through the career development program and provide mentorship and connections within their areas of expertise. The research will be conducted at Mayo Clinic a premier research institution with access to extensive epidemiology, health services and translational research resources that will enhance Dr. Thorsteinsdottir's chances to achieve her ambitious aims.