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）：类风湿性关节炎（RA）是最常见的炎性关节炎，影响多达1%的美国成年人，并导致严重残疾、过度死亡和经济负担。类风湿性关节炎药物在利益和伤害之间进行了艰难的权衡。因此，RA患者需要彻底了解疾病及其治疗方法，以便做出明智的决定。在过去十年中，类风湿关节炎患者的健康状况得到了显著改善，这主要归功于治疗的进步。尽管取得了这一进展，但某些群体在利用和成果方面仍然存在差异。例如，我们记录了不同种族/民族、英语水平有限（LEP）、移民身份和教育程度在疼痛、功能和全球RA状态方面的显著差异。最后，我们观察到生物制剂的使用差异，这些差异在改善预后方面发挥着重要作用。总之，这些研究结果表明，来自弱势群体的患者和医生之间的沟通障碍可能会导致患者知识，治疗选择，依从性以及最终结果的差异。为了解决这样的沟通问题，已经出版了针对患者和临床医生的总结指南，这些指南提供了关于RA药物的比较疗效，有效性和危害的证据。然而，这些指南在现实世界中的实用性，不成比例地服务于弱势群体的门诊护理设置是未知的。虽然一开始我们承认，一般来说，了解这些强效的、潜在的毒性药物对于做出明智的治疗决定至关重要，但我们必须确定目前的总结指南是否满足脆弱的类风湿性关节炎患者的需求，如果不是，调整指南以满足这些患者及其风湿病学家的需求，然后，严格测试改编后的指南如何影响沟通和决策。因此，本项目的具体目标是：1）评估目前对类风湿关节炎治疗的了解程度，其在LEP、低识字率、少数民族或移民身份定义的类风湿关节炎弱势人群中的益处和危害;当前类风湿关节炎总结指南的可接受性和实用性;以及在决策和信息传递模式中的作用偏好; 2）开发创新的RA摘要指南的印刷和视频改编以及针对弱势人群的新型决策辅助工具; 3）进行试点随机试验，以测试改编的指南和决策辅助工具，并评估开发的工具随时间推移对患者报告结局的影响。该项目将促进我们目前对障碍的理解，以提供准确的，可解释的循证信息，这些信息涉及RA药物的有效性，疗效，危害和益处，这些患者的健康差异风险最大，并允许成功开发适应性总结指南和创新性决策辅助RA弱势人群。 公共卫生相关性：复杂的慢性疾病，如类风湿性关节炎（RA），需要全面了解疾病及其治疗方法，以便患者就其护理做出明智的决定。尽管治疗取得了进展，但一些患者仍然有更多的疼痛，更差的功能，以及更少使用某些药物;特别是那些种族或少数民族的患者，那些英语说得不好的人，出生在美国以外，或者受教育程度较低。拟议的项目将推进我们目前对障碍的理解，以提供准确的，可解释的循证信息，关于RA药物治疗的有效性，疗效，危害和益处，以最大风险的患者较差的结果，并允许成功开发创新的，适当的总结用药指南和决策辅助工具，为RA弱势群体及其风湿病学家。