Preparing Older Veterans with Serious and Chronic Illness for Decision Making

让患有严重和慢性疾病的老年退伍军人做好决策准备

• 批准号: 8597953
• 负责人: REBECCA L SUDORE
• 金额: --
• 依托单位: VETERANS AFFAIRS MED CTR SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-07-01 至 2016-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8597953
• 关键词: Access to Information; Address; Advance Care Planning; Advance Directives; Age-Years; Behavior; CD-ROM; Cardiac; Caring; Chronic; Chronic Care; Chronic Disease; Clinical; Code; Cognitive; Communication; Complex; Control Groups; Decision Making; Documentation; Educational process of instructing; Effectiveness; Elderly; Ensure; Ethnic Origin; Exercise; Face; Future; Gender; Goals; Health; Health education; Healthcare Systems; Home environment; ICD-9; Individual; Intervention; Interview; Judgment; Life; Measures; Medical; Online Systems; Outcome; Pamphlets; Patient Self-Report; Patient-Centered Care; Patients; Policies; Preparation; Primary Health Care; Procedures; Process; Publishing; Race; Randomized; Randomized Controlled Trials; Reading; Recruitment Activity; Reporting; Research; Resources; Resuscitation; Self Efficacy; Site; Stress; Techniques; Testing; Training; Veterans; Work; arm; base; behavior measurement; design; efficacy testing; empowerment; end of life; experience; fifth grade; follow-up; health literacy; improved; interest; literacy; meetings; ninth grade; novel; patient oriented; primary outcome; randomized trial; satisfaction; secondary outcome; skills; standard measure; surrogate decision maker; web site

DESCRIPTION (provided by applicant): 4.5 million Veterans are over age 65 and an increasing number are living with chronic and serious illness. Most older Veterans and their surrogate decision makers will eventually face complex, ongoing decisions over the course of chronic illness. These decisions are difficult, especially for the 50% of older Veterans with limited health literacy. The old paradigm of advance care planning has focused on making decisions about life- prolonging procedures (e.g., resuscitation) by completing advance directives. Yet, this old paradigm is problematic. The forms are difficult to understand and often culturally insensitive. They also fail to prepare patients with concrete skills, such as how to identify one's values and communicate with surrogates and clinicians. We have published a new paradigm of advance care planning that focuses instead on preparing patients to communicate with their surrogates and to actively participate with clinicians in making the best possible in-the-moment decisions. The new paradigm seeks to ensure that complex, ongoing decisions are based on a comprehensive set of considerations including the current clinical context, evolving goals, and patients' and surrogates' needs. To do this effectively, Veterans need to prepare. However, an easy-to-use, culturally-appropriate preparation guide does not exist. We have created an easy-to-understand (5th grade reading level) preparation guide based on our new paradigm called PREParation, Activation, Reflection, and Engagement in advance care planning or PREPARE. PREPARE is designed to teach Veterans preparation skills including how to choose a surrogate and discuss surrogate decision making, clarify personal values for specific health states, and ask clinicians questions to make informed choices. The aims of this study are: (1) to conduct a randomized control trial to determine the efficacy of PREPARE to engage older Veterans with chronic illness in preparation skill behaviors (i.e., did they choose a surrogate, clarify their values, ask clinicans questions); (2) to determine the efficacy of PREPARE to activate Veterans and clinicians within clinical encounters (i.e., did Veterans ask clinicians questions or discuss preparation topics and did clinicians respond) and to improve satisfaction with decision making, and (3) to obtain input from Veterans, surrogates, and clinicians about implementation of PREPARE within the VA. To achieve Aim 1, 205 Veterans will be randomly assigned to the intervention (PREPARE materials plus an advance directive) and 205 will be assigned to the control group (advance directive only). Veterans in the PREPARE arm will view the easy-to-understand, multi- media PREPARE website during the study interview and then take home PREPARE materials in photo booklet and pamphlet format to ensure universal access to the information. The primary outcome is Veteran-reported engagement in preparation skill behaviors at 3 and 6 months, which will be measured with standard cognitive behavioral measures. For Aim 2, activation within the clinical encounters will be measured with validated quantitative analysis techniques of audio-recordings. Satisfaction with decision making will be measured with validated, self-reported measures. For Aim 3, we will ask Veterans randomized to the PREPARE arm and their surrogates and clinicians how best to implement PREPARE within the clinical setting. We will use standard parametric or non-parametric statistical tests to assess group differences, will control for demographic or other variables that differ between randomization groups, and adjust for potential clustering by clinician. For Aims 1 and 2 we will assess differences in engagement and satisfaction by race/ethnicity, literacy, and gender. The research team has extensive experience testing literacy-appropriate, multi-media health education materials in randomized trials. The study team is poised to test the efficacy of PREPARE, and findings from this study will pave the way for multi-site effectiveness testing and widespread VA dissemination of PREPARE.

描述（由申请人提供）： 4.5百万退伍军人年龄超过65岁，越来越多的人患有慢性和严重疾病。大多数老年退伍军人和他们的代理决策者最终将面临复杂的，持续的决定在慢性疾病的过程中。这些决定是困难的，特别是对于50%的老年退伍军人与有限的健康素养。预先护理计划的旧范例集中于做出关于延长生命的程序的决定（例如，复苏）通过完成预先指示。然而，这种旧的模式是有问题的。这些表格很难理解，而且往往对文化不敏感。他们也没能让病人掌握具体的技能，比如如何识别自己的价值观，如何与代理人和临床医生沟通。我们已经发布了一个新的预先护理计划范例，重点是让患者准备好与他们的代理人沟通，并积极参与临床医生做出最好的即时决定。新的模式旨在确保复杂的，持续的决策是基于一套全面的考虑因素，包括当前的临床背景，不断变化的目标，以及患者和代理人的需求。要做到这一点，退伍军人必须做好准备。然而，一个易于使用的，文化上适当的准备指南并不存在。我们已经创建了一个易于理解的（5年级阅读水平）准备指南的基础上，我们的新范式称为准备，激活，反射，并在提前护理计划或参与。EQUEE旨在教授退伍军人准备技能，包括如何选择代理人和讨论代理人决策，澄清特定健康状态的个人价值观，并向临床医生提出问题以做出明智的选择。本研究的目的是：（1）进行一项随机对照试验，以确定慢性疾病的老年退伍军人在准备技能行为（即，他们是否选择了替代者、澄清了他们的价值观、询问了临床医生问题）;（2）为了确定在临床接触中激活退伍军人和临床医生的CNOE的功效（即，退伍军人是否询问临床医生问题或讨论准备主题，临床医生是否回应），并提高决策满意度，以及（3）从退伍军人，代理人和临床医生那里获得关于在VA内实施CIPE的输入。为了实现目标1，205名退伍军人将被随机分配到干预组（预先指导材料加上预先指导），205名将被分配到对照组（仅预先指导）。参加研究访问的退伍军人会浏览简单易懂的多媒体研究访问网站，然后把研究访问的照片小册子和小册子带回家，以确保所有人都能获得研究访问的信息。主要结果是退伍军人在3个月和6个月时报告的参与准备技能行为，这将通过标准认知行为测量进行测量。对于目标2，将使用经验证的录音定量分析技术测量临床接触中的激活。决策满意度将通过经验证的自我报告措施进行测量。对于目标3，我们将询问随机分配到BAE组的退伍军人及其代理人和临床医生如何在临床环境中最好地实施BAE。我们将使用标准参数或非参数统计检验来评估组间差异，将控制随机化组间差异的人口统计学或其他变量，并根据临床医生的潜在聚类进行调整。对于目标1和2，我们将评估不同种族/民族、文化程度和性别在参与度和满意度方面的差异。研究小组在随机试验中测试适合识字的多媒体健康教育材料方面拥有丰富的经验。该研究小组准备测试VAE的有效性，这项研究的结果将为VAE的多站点有效性测试和广泛的VA传播铺平道路。