The design of a low literacy decision aid about rheumatoid arthritis medications developed in three languages for use during the clinical encounter

Abstract

BackgroundShared decision-making in rheumatoid arthritis (RA) care is a priority among policy makers, clinicians and patients both nationally and internationally. Demands on patients to have basic knowledge of RA, treatment options, and details of risk and benefit when making medication decisions with clinicians can be overwhelming, especially for those with limited literacy or limited English language proficiency. The objective of this study is to describe the development of a medication choice decision aid for patients with rheumatoid arthritis (RA) in three languages using low literacy principles.MethodsBased on the development of a diabetes decision aid, the RA decision aid (RA Choice) was developed through a collaborative process involving patients, clinicians, designers, decision-aid and health literacy experts. A combination of evidence synthesis and direct observation of clinician-patient interactions generated content and guided an iterative process of prototype development.ResultsThree iterations of RA Choice were developed and field-tested before completion. The final tool organized data using icons and plain language for 12 RA medications across 5 issues: frequency of administration, time to onset, cost, side effects, and special considerations. The tool successfully created a conversation between clinician and patient, and garnered high acceptability from clinicians.ConclusionsThe process of collaboratively developing an RA decision aid designed to promote shared decision making resulted in a graphically-enhanced, low literacy tool. The use of RA Choice in the clinical encounter has the potential to enhance communication for RA patients, including those with limited health literacy and limited English language proficiency.

Use of Low‐Literacy Decision Aid to Enhance Knowledge and Reduce Decisional Conflict Among a Diverse Population of Adults With Rheumatoid Arthritis: Results of a Pilot Study

“…RA Choice was created to facilitate conversation between patients and clinicians about RA medications (13) and support SDM with patients who experienced an inadequate response to methotrexate monotherapy. Developed in three languages, the tools are aimed at populations with barriers to communication.…”

Shared Decision Making With Vulnerable Populations in the Emergency Department

“…It is important that culturally and linguistically fluent interpreters be used. 33,34 Providers who do not have that level of fluency should not use their own second-language skills, as is often done in clinical encounters. Additionally, it is not optimal to simply translate SDM clinical decision tools into other languages.…”

Shared decision-making in rheumatology : what matters to patients?

“…Only one other PtDA includes all DMARD options and a clear plan for integration in daily clinical care. It consists of a card deck to be used during the medical encounter and is developed for patients with limited health literacy or limited English language proficiency (158).…”

“…Furthermore, PtDA's sometimes have a positive impact on patients' satisfaction with decision-making, anxiety, adherence or health outcomes (30). Although these effects are not likely to be very different, in rheumatology, only a few studies on PtDA's have been reported and their effects have not yet been thoroughly determined (30,66,158).…”

“…While patients with rheumatic diseases often face long-term treatment decisions, only a few studies have been reported on PtDAs for initiating disease modifying anti-rheumatic drug (DMARD) therapy (30,66,158,159). DMARDs are the core element of the management of inflammatory arthritis in order to control the disease process and to relieve or reverse symptoms (58-60).…”