Patient goals in rheumatoid arthritis care: A systematic review and qualitative synthesis.

OBJECTIVE: During the clinical encounter, rheumatoid arthritis (RA) patient goals for care often go unexplored. The aim of the present systematic review was to identify needs, goals and expectations of RA patients in order better to guide systematic elicitation of patient goals in clinical encounters. METHODS: An academic librarian searched MEDLINE, PsychINFO and the Cochrane Library using a specialized algorithm developed to identify articles about patient goals for RA care. Investigators screened search results according to prespecified inclusion criteria and then reviewed included articles and synthesized the evidence qualitatively, utilizing an inductive approach. RESULTS: A total of 909 titles were retrieved in the literature search, of which 871 were excluded after a title/abstract screen. Of the remaining 38, 22 papers were included in the final review. Investigators identified four major themes in the literature: (a) the bodily experience of RA; (b) achieving normalcy and maintaining wellness; (c) social connectedness and support; and (d) interpersonal and healthcare system interactions. CONCLUSION: Patients' goals when receiving care for RA are multidimensional and span several facets of everyday life. Goals for RA care should be collaboratively developed between patients and providers, with particular attention to the patient's life context and priorities.

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.

OBJECTIVE: Despite innovations in treatment of rheumatoid arthritis (RA), adherence is poor and disparities persist. Shared decision making (SDM) promotes patient engagement and enhances adherence; however, few tools support SDM in RA. Our objective was to pilot a low-literacy medication guide and decision aid to facilitate patient-clinician conversations about RA medications. METHODS: RA patients were consecutively enrolled into 1 of 3 arms: 1) control; patients received existing medication guide prior to clinic visit, 2) adapted guide prior to visit, and 3) adapted guide prior to plus decision aid during visit. Outcomes were collected immediately postvisit, at 1-week, and at 3- and 6-month interviews. Eligible adults had to have failed at least 1 disease-modifying antirheumatic drug and fulfill 1 of the following: age >65 years, immigrant, non-English speaker, less than high school education, limited health literacy, and racial/ethnic minority. Primary outcomes were knowledge of RA medications, decisional conflict, and acceptability of interventions. RESULTS: The majority of 166 patients were immigrants (66%), non-English speakers (54%), and had limited health literacy (71%). Adequate RA knowledge postvisit in arm 3 was higher (78%) than arm 1 (53%; adjusted odds ratio 2.7, 95% confidence interval 1.2, 6.1). Among patients with a medication change, there was lower (better) mean decisional conflict in arms 2 and 3 (P = 0.03). There were no significant differences in acceptability. CONCLUSION: A low-literacy medication guide and decision aid was acceptable, improved knowledge, and reduced decisional conflict among vulnerable RA patients. Enhancing knowledge and patient engagement with decision support tools may lead to medication choices better aligned with RA patients' values and preferences.

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

BACKGROUND: Shared 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. METHODS: Based 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. RESULTS: Three 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. CONCLUSIONS: The 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.