Medication Summary Guides for Vulnerable Populations with Rheumatoid Arthritis

描述(申请人提供)：类风湿性关节炎(RA)是最常见的炎症性关节炎，影响高达1%的美国成年人，并导致严重的残疾、额外的死亡率和经济负担。RA药物在利与害之间进行了艰难的权衡。因此，RA患者需要对疾病及其治疗有透彻的了解，才能做出明智的决定。在过去的十年中，类风湿性关节炎患者的健康状况在很大程度上由于治疗的进步而得到显著改善。尽管取得了这一进展，但某些群体在利用和成果方面的差距依然存在。例如，我们记录了种族/民族、有限的英语水平(LEP)、移民身份和教育程度在疼痛、功能和全球RA地位方面的显著差异。最后，我们观察到在改善结果中发挥重要作用的生物制剂的使用方面的差异。总之，这些发现表明，来自弱势群体的患者和医生之间的沟通障碍可能是患者知识、治疗选择、依从性以及最终结果不同的原因。为了处理这样的沟通问题，为患者和临床医生提供了关于RA药物的相对有效性、有效性和危害性的证据的简要指南已经出版。然而，这些指南在现实世界的门诊护理环境中的效用尚不清楚，这种环境不成比例地服务于弱势人群。虽然我们首先承认，总的来说，了解这些有效的、潜在的毒性药物对于做出明智的治疗决定至关重要，但我们必须确定当前的简要指南是否服务于脆弱的类风湿患者的需求，如果不是，调整指南以满足这些患者及其风湿病医生的需求，然后严格测试调整后的指南如何影响沟通和决策。因此，这个项目的具体目标是：1)评估由LEP、低识字率、少数民族或移民身份界定的RA弱势人群对RA疗法的当前知识水平、其益处和危害；当前RA摘要指南的可接受性和实用性；以及对在决策和信息提供方式中的作用的偏好；2)为弱势人群开发RA摘要指南的创新印刷版和视频，以及一种新颖的决策辅助工具；以及3)进行试点随机试验，以测试调整后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的结果的影响。该项目将促进我们目前对向健康差距风险最大的患者提供关于RA药物的有效性、有效性、危害和益处的准确、可解释的循证信息的障碍的理解，并使我们能够成功地为患有RA的弱势人群开发一份经过调整的摘要指南和创新的决策援助。 公共卫生相关性：一种复杂的慢性疾病，如类风湿性关节炎(RA)，需要对疾病及其治疗有透彻的了解，以便患者做出关于其护理的明智决定。尽管治疗取得了进展，但一些患者继续感到更痛，功能更差，某些药物的使用更少；特别是种族或少数民族患者，那些英语不太好的人，出生在美国以外的人，或受教育程度较低的人。拟议的项目将促进我们目前对向那些具有较差预后风险的患者提供关于RA药物的有效性、有效性、危害和益处的准确、可解释的循证信息的障碍的理解，并使我们能够成功地为患有RA的弱势人群及其风湿病医生开发创新的、适当的概要用药指南和决策辅助工具。

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.