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.

摘要 研究 越来越多的晚期肾病（ESRD）患者需要接受血液透析 (HD)而不觉得他们曾经被给予过治疗选择。一种道德义务， 从1997年开始，每个人都导致八岁和九十岁的HD年龄调整后增加了57%， 2003.大多数患者报告说，除了开始透析之外，他们没有任何选择。尽管越来越多 认识到这种不尊重病人的自主权，很少有人知道病人如何选择之间 ESRD治疗选择或决策辅助（DA）是否可以改善情况。DAs已经被证明 使患者能够做出符合其价值观和护理目标的选择。DA也增加了患者 参与决策并积极影响患者与提供者的沟通。我们假设 显示ESRD治疗选择的个体化风险和获益估计的简单访视中DA将 促进共同决策，帮助患者选择符合其价值观的治疗， 增加他们的自主权。在这项研究中，我们建议： 通过以下方式提高老年ESRD患者的尊严、自主性和生活质量 1)通过决策辅助改善风险预测及其护理点翻译 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， 保障病人的自主权和获得护理的机会，并为今后的卫生政策提供信息。 这个项目的成功完成有可能影响成千上万的老年患者的生活， 这些困难的决定，每年在美国，通过广泛的传播和政策影响。 候选 博士Thorsteinsdottir热衷于在这些具有挑战性的医疗保健和资源分配正义 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。她是董事 获得了普通内科和姑息治疗的认证，并在哈佛完成了生物伦理学的奖学金 医学院她还在不同的医疗保健系统的许多不同的医疗保健机构执业。 通过承担这些目标博士Thorsteinsdottir将自己定位为独立作为一个老化的结果 研究员她的总体目标是成为一名独立资助的研究人员和国家领导人， 老年医学成果研究：为此，她的目标是 1.提高老年人观察数据分析的技能： 关于体弱老年人的随机数据和招募此类试验的固有挑战，至关重要的是 能够浏览大型观察性登记研究，以确定治疗的风险和获益， 很老了。这一领域的正式发展将使Thorsteinsdottir博士在未来的合作中处于有利地位， 国家以及国际同事通过建立机构合作，如高 价值医疗保健联盟和瑞典卡罗林斯卡大学以及美国国立卫生研究院资助的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， Thorsteinsdottir医生需要清楚地了解患者的价值观， 家庭/护理人员和临床医生。定性研究对于理解这些价值观和 促进她的职业发展。 3.获得旨在促进风险预测转化为护理点干预措施的技能。 博士Thorsteinsdottir计划为面临透析决定的患者设计一种决策辅助工具。做 因此，她需要在共同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有关以下问题的答案： 老年体弱患者透析的个体化风险-获益平衡。这样她就可以 流行病学应用方法、卫生经济学和共同决策方面的培训，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R 01提案中的传播和实施工作 指导和体制环境 我们已经组建了一个强大的本地导师团队，由NIH资助的知识领域的专家组成。 综合，共同决策，伦理学和卫生经济学以及老年病，虚弱和痴呆症， 将指导Thorsteinsdottir博士完成研究和培训计划为了加强这个团队，我们有 我组建了一个由全国公认的顾问组成的小组，以监督我在职业发展中的进展 在他们的专业领域内规划并提供指导和联系。 这项研究将在马约诊所进行，这是一家一流的研究机构， 流行病学，卫生服务和转化研究资源，将提高博士Thorsteinsdottir的 实现她雄心勃勃的目标的机会。