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

为老年患者提供基于证据的遭遇决策援助，以促进终末期肾病治疗选择的共同决策

• 批准号: 9353274
• 负责人: Bjoerg Thorsteinsdottir
• 金额: $ 19.25万
• 依托单位: MAYO CLINIC ROCHESTER
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-15 至 2021-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9353274
• 关键词: Acute; Address; Affect; Age; Aging; American; Area; Benefits and Risks; Bioethics; Caring; Chronic; Clinic; Clinical; Collaborations; Communication; Complex; Data; Data Analyses; Data Sources; Decision Aid; Decision Making; Dementia; Development; Dialysis patients; Dialysis procedure; Disease; Disease Outcome; Economics; Education; Elderly; End stage renal failure; Environment; Epidemiologic Methods; Epidemiology; Equilibrium; Ethics; Failure; Family; Family Caregiver; Feeling; Fellowship; Foundations; Frail Elderly; Frail Older Adults; Funding; Future; Geriatrics; Goals; Health Policy; Health Resources; Health Services Accessibility; Health Services Research; Healthcare; Healthcare Systems; Hemodialysis; Iceland; Impaired cognition; Individual; Institution; Internal Medicine; International; Intervention; Interview; Justice; K-Series Research Career Programs; Knowledge; Life; Link; Malignant Neoplasms; Mentorship; Methodology; Methods; Monitor; Morals; Nonagenarian; Outcome; Outcomes Research; Palliative Care; Patient Participation; Patient-Centered Care; Patients; Population; Positioning Attribute; Professional Organizations; Program Development; Provider; Qualitative Research; Quality of life; Randomized; Recruitment Activity; Registries; Reporting; Research; Research Personnel; Research Technics; Research Training; Resource Allocation; Resources; Review Literature; Risk; Risk stratification; Societies; Solid; Structure; Sweden; Symptoms; Testing; Time; Training; Translating; Translational Research; Translations; Treatment outcome; Uncertainty; United States National Institutes of Health; Universities; Visit; Work; base; career development; clinical practice; cohort; design; disorder risk; evidence base; expectation; experience; field study; frailty; functional decline; health economics; high risk; improved; medical schools; mortality; multiple chronic conditions; older patient; outcome forecast; patient oriented; patient population; payment; point of care; policy implication; population based; preference; prognostic; prototype; randomized trial; shared decision making; skills; systematic review; theories; therapy design; tool; treatment choice; treatment effect; user-friendly

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.

抽象的 研究 生命后期达到终阶段肾脏疾病（ESRD）的患者越来越多地放在血液透析上 （高清）没有感觉到他们有选择的治疗选择。治疗的道德势在必行 从1997年开始，每个人的HD年龄增加了57％的高清增加，HD的增加增加了。 2003年。大多数患者报告说，他们没有任何选择，而是开始透析。尽管增长 认识到这种未能尊重患者自主权的认识，对患者如何选择的知之甚少 ESRD治疗方案或决策AIDS（DA）是否可以改善情况。 DA已显示 授权患者做出与他们的价值观和护理目标一致的选择。 DAS也增加了患者 参与决策并对患者提供的沟通产生积极影响。我们假设这一点 一个简单的访问中DA，显示了ESRD治疗选择的个性化风险和收益估计值 促进共同的决策并帮助患者选择符合其价值观的治疗 偏好，提高其自主权。在这项研究中，我们建议： 加强ESRD老年患者的尊严，自主权和生活质量 1）通过决策援助改善风险预测及其护理点翻译 2）批判性评估透析当前付款改革的道德和经济紧张局势 维护患者的自主权和获得护理并为未来的健康政策提供信息。 该项目的成功完成有可能影响成千上万面对的老年患者的生活 这些艰难的决定每年在美国，通过广泛的传播和政策影响。 候选人 Thorsteinsdottir博士对这些具有挑战性的医疗保健和资源分配充满热情 人口老龄化的时代。她将这些任务带来了独特的教育和经验。她是董事会 在普通内科和姑息治疗中获得认证，并在哈佛完成了生物伦理学研究金 医学院。她还在不同的医疗保健系统中的许多不同医疗保健环境中实践。 通过实现这些目标，Thorsteinsdottir博士将把自己定位为独立的成果 研究员。她的总体目标是成为一名独立资助的研究员和国家领导者 老年结果研究：为此，她的目标是 1。提高老年人人群的观察数据分析技能：因为很少 关于脆弱的老年人的随机数据以及招募此类试验的固有挑战，至关重要 能够浏览大型观察登记处，以确定疗法的风险和益处 很老。该领域的正式发展将使Thorsteinsdottir博士定位，以便将来与 国家以及国际同事通过既定的机构合作，例如高 价值医疗保健财团和瑞典的卡罗林斯卡大学以及NIH资助的年龄研究 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改进 决策，Thorsteinsdottir博士将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和 进一步的职业发展。 3。获取旨在促进风险预测转化为护理干预措施的技能。 Thorsteinsdottir博士计划为面对透析的患者设计决策援助。做 她需要在共同决策的基本理论和技能上一个坚实的基础。 K奖将使她能够继续寻求有关有关的重要问题的答案 体弱的老年患者中透析的个性化风险效益平衡。这会让她追求 应用流行病学方法，健康经济学和共享决策以及 定性和翻译方法论，并与该领域的研究人员建立联系以进行协作 将来的R01提案中的传播和实施工作 指导和机构环境 我们已经组建了一个由NIH资助专家组成的强大当地指导团队 综合，共同的决策，道德和健康经济学以及老年医学，脆弱和痴呆症 将通过拟议的研究和培训来指导Thorsteinsdottir博士。为了增强这支团队，我们有 组建了一个全国认可的顾问小组，以监控我的职业发展进步 在其专业知识领域内提供指导和联系。 这项研究将在梅奥诊所进行一家主要的研究机构，并获得广泛的访问 流行病学，卫生服务和翻译研究资源，将增强Thorsteinsdottir博士 实现她雄心勃勃的目标的机会。