Medication Summary Guides for Vulnerable Populations with Rheumatoid Arthritis

类风湿关节炎易感人群的药物总结指南

• 批准号: 8007461
• 负责人: EDWARD H YELIN
• 金额: $ 137.68万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-09-01 至 2013-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8007461
• 关键词: Medication; Summary; Guides; Vulnerable; Populations

DESCRIPTION (provided by applicant): Rheumatoid arthritis (RA) is the most common inflammatory arthritis affecting up to 1% of U.S. adults and causes significant disability, excess mortality and economic burden. RA medications pose difficult trade-offs between benefit and harm. Therefore, patients with RA require a thorough understanding of the disease and its treatments to make informed decisions. Over the past decade, health outcomes for persons with RA have improved significantly due largely to advances in treatment. Despite this progress, disparities in utilization and outcomes persist among certain groups. For example, we have documented substantial disparities in pain, function, and global RA status by race/ethnicity, limited English language proficiency (LEP), immigrant status, and education. Finally, we have observed differences in the use of biologic agents that play an important role in improving outcomes. Together, these findings suggest that communication barriers between patients from vulnerable groups and physicians may account for differences in patient knowledge, treatment choices, adherence, and ultimately, outcomes. To deal with such communication problems, summary guides for patients and clinicians that present the evidence on the comparative efficacy, effectiveness, and harms of RA medications have been published. However, the utility of these guides in a real-world, ambulatory care setting that disproportionately serves vulnerable populations is unknown. While at first we acknowledge that, in general, an understanding of these potent, potentially toxic medicines is crucial to making an informed decision about treatment, we must establish whether the current summary guides serve the needs of vulnerable patients with RA, and if not, adapt the guides to meet the needs of such patients and their rheumatologists, and then, rigorously test how the adapted guides affect communication and decision making. Therefore, the specific aims of this project are to: 1) assess current level of knowledge of RA therapies, their benefits and harms among vulnerable populations with RA defined by LEP, low literacy, minority or immigrant status; the acceptability and utility of the current RA summary guides; and preferences for role in decision-making and mode of information delivery; 2) develop innovative print and video adaptations of the RA summary guides and a novel decision aid tool for vulnerable populations; and 3) conduct a pilot randomized trial to test the adapted guides and decision aid tool, and evaluate the impact of the developed tools on patient-reported outcomes over time. This project will advance our current understanding of barriers to providing accurate, interpretable evidence-based information on the effectiveness, efficacy, harms and benefits of RA medications to those patients at greatest risk of health disparities and allow for the successful development of an adapted summary guide and an innovative decision aid for vulnerable populations with RA. PUBLIC HEALTH RELEVANCE: A complex, chronic disease such as rheumatoid arthritis (RA) requires thorough knowledge of the disease and its treatments in order for patients to make informed decisions regarding their care. Despite advances in treatment, some patients continue to have more pain, worse function, and less use of certain drugs; especially patients who are racial or ethnic minorities, those who do not speak English very well, were born outside the U.S., or have less education. The proposed project will advance our current understanding of barriers to providing accurate, interpretable evidence-based information on the effectiveness, efficacy, harms and benefits of RA medications to those patients at greatest risk of poorer outcomes and allow for the successful development of innovative, appropriate summary medication guides and a decision aid tool for vulnerable populations with RA and their rheumatologists.

描述（由申请人提供）：类风湿关节炎（RA）是影响多达1％的美国成年人的最常见炎症性关节炎，并导致严重的残疾，死亡率过多和经济负担。 RA药物在福利和危害之间造成了困难的权衡。因此，RA患者需要对疾病及其治疗方法有透彻的了解，以做出明智的决定。在过去的十年中，RA患者的健康成果在很大程度上取得了显着改善，这在很大程度上是由于治疗的进步。尽管取得了这种进步，但某些群体之间的利用和结果差异仍然存在。例如，我们通过种族/种族，有限的英语水平（LEP），移民地位和教育记录了疼痛，功能和全球RA状况的实质性差异。最后，我们观察到在使用在改善预后中起重要作用的生物学剂的使用中存在差异。总之，这些发现表明，弱势群体和医生的患者之间的沟通障碍可能解释了患者知识，治疗选择，依从性以及最终结果的差异。为了解决此类沟通问题，已经发布了有关RA药物的比较疗效，有效性和危害的证据的患者和临床医生的摘要指南。但是，这些指南在现实世界中，不成比例地为脆弱人群服务的室外护理环境中的实用性尚不清楚。虽然起初我们承认，总的来说，对这些有效的，潜在的有毒药物的理解对于对治疗做出明智的决定至关重要，但我们必须确定当前的摘要指南是否满足了RA患者的脆弱患者的需求，如果没有，则适应了指南，以满足此类患者的需求及其风湿病学家及其风湿病学家的需求，并严格测试适应性的引导和决定的沟通和决策。因此，该项目的具体目的是：1）评估RA疗法的当前知识水平，其在LEP，低识字率，少数或移民身份的RA的脆弱人群中的收益和危害；当前RA摘要指南的可接受性和效用；以及在决策和信息传递方式中作用的偏好； 2）开发RA摘要指南的创新印刷和视频改编，以及针对弱势群体的新型决策援助工具； 3）进行试验随机试验，以测试适应的指南和决策援助工具，并评估开发工具随时间推移对患者报告的结果的影响。该项目将提高我们对障碍的最新理解，以提供有关RA药物的有效性，有效性，危害和益处的准确，可解释的基于证据的信息，向那些具有最大健康差异风险的患者，并允许成功地制定适应性的摘要指南以及对RA的脆弱人群的创新决策援助。 公共卫生相关性：一种复杂的慢性疾病，例如类风湿关节炎（RA），需要对疾病及其治疗进行彻底了解，以便患者就其护理做出明智的决定。尽管有治疗的进步，但一些患者仍会继续疼痛，功能较差和对某些药物的使用更少。尤其是种族或少数民族的患者，那些说英语不太好，出生于美国以外或受过较少教育的患者。拟议的项目将提高我们对障碍的最新理解，以提供有关RA药物的有效性，有效性，危害和益处的准确，可解释的基于证据的信息。