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: 8270871
• 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/8270871
• 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）： 450 万退伍军人年龄超过 65 岁，并且越来越多的人患有慢性和严重疾病。大多数老年退伍军人及其代理决策者最终将在慢性病过程中面临复杂的、持续的决策。这些决定很困难，特别是对于 50% 健康素养有限的老年退伍军人来说。预先护理计划的旧模式侧重于通过完成预先指示来做出有关延长生命的程序（例如复苏）的决定。然而，这种旧的范式是有问题的。这些形式很难理解，而且往往对文化不敏感。他们也未能让患者具备具体技能，例如如何识别自己的价值观以及如何与代理人和临床医生沟通。我们发布了一种新的预先护理计划范例，重点是让患者做好与代理人沟通的准备，并积极参与临床医生做出最佳的即时决策。新范式旨在确保复杂、持续的决策基于一系列全面的考虑因素，包括当前的临床背景、不断发展的目标以及患者和代理人的需求。为了有效地做到这一点，退伍军人需要做好准备。然而，不存在易于使用、适合文化的准备指南。我们根据预先护理计划或 PREPARE 中的 PREParation、激活、反思和参与的新范式创建了易于理解的（五年级阅读水平）准备指南。 PREPARE 旨在教授退伍军人准备技能，包括如何选择代孕妈妈和讨论代孕妈妈的决策、阐明特定健康状况的个人价值观，以及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) 进行随机对照试验，以确定 PREPARE 让患有慢性病的老年退伍军人参与准备技能行为的有效性（即，他们是否选择了代理人、澄清了自己的价值观、向临床医生提出了问题） ; (2) 确定 PREPARE 在临床接触中激活退伍军人和临床医生的功效（即退伍军人是否向临床医生提出问题或讨论准备主题以及临床医生是否做出回应）并提高决策满意度，以及 (3) 获取来自退伍军人、代理人和临床医生关于在 VA 内实施 PREPARE 的信息。为了实现目标 1，205 名退伍军人将被随机分配到干预组（准备材料加预先指示），205 名退伍军人将被分配到对照组（仅限预先指示）。 PREPARE 部门的退伍军人将在研究访谈期间查看易于理解的多媒体 PREPARE 网站，然后将照片小册子和小册子格式的 PREPARE 材料带回家，以确保普遍获取信息。主要结果是退伍军人报告的 3 个月和 6 个月时准备技能行为的参与度，这将通过标准认知行为测量进行测量。对于目标 2，将使用经过验证的录音定量分析技术来测量临床遭遇中的激活情况。对决策的满意度将通过经过验证的自我报告措施来衡量。对于目标 3，我们将询问随机分配到 PREPARE 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 PREPARE。我们将使用标准参数或非参数统计检验来评估组间差异，控制随机组之间差异的人口统计或其他变量，并根据临床医生的潜在聚类进行调整。对于目标 1 和 2，我们将评估种族/民族、识字率和性别在参与度和满意度方面的差异。研究团队在随机试验中测试适合读写能力的多媒体健康教育材料方面拥有丰富的经验。研究小组准备测试 PREPARE 的功效，这项研究的结果将为 PREPARE 的多站点有效性测试和广泛的 VA 传播铺平道路。