Medication Summary Guides for Vulnerable Populations with Rheumatoid Arthritis

Yelin, Edward

Abstract

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.