Decision Needs and Preferred Strategies for Shared Decision-Making in Rheumatoid Arthritis: Perspectives of Canadian Urban Indigenous Women.

OBJECTIVE: Decision-making for treatment of rheumatoid arthritis (RA) is complex, with multiple beneficial medication options available, but with the potential for treatment-related adverse effects and significant economic considerations. Indigenous patients make treatment decisions informed by an interplay of clinical, family, and societal factors. Shared decision-making may represent an approach to support treatment decisions in a culturally congruent manner. Our objective was to identify aspects of arthritis care that Indigenous participants found relevant for shared decision-making and to explore preferences for shared decision-making strategies. METHODS: A purposive sampling from rheumatology clinics that provide services to Indigenous patients in a Canadian urban center was used to recruit participants for interviews. Seven participants were recruited to reach content saturation. Interview content was coded by 2 individuals, including an Indigenous patient with RA, and the data were analyzed via thematic analysis. RESULTS: Participants were all women ages 37-61 years living with RA. Participants supported the idea that shared decision-making would be beneficial, primarily to support decisions around treatment plans and medication changes. Shared decision-making approaches would need to reflect Indigenous-specific content areas, such as benefits and risks of therapy informed by data from Indigenous patient populations and inclusion of traditional modes of healing. All participants were interested in having a decision coach and preferred that decision aids be in both paper and electronic formats for accessibility. CONCLUSION: This study advances knowledge in the priority areas and specific content needed in the shared decision-making process and the preferences of shared decision-making strategies relevant and appropriate for urban Indigenous women living with RA in Canada.

Adaptation of a Shared Decision-Making Tool for Early Rheumatoid Arthritis Treatment Decisions with Indigenous Patients.

BACKGROUND: Patient decision aids (PtDAs) enable shared decision-making between patients and healthcare providers. Adaptations to PtDAs for use with populations facing inequities in healthcare can improve the relevancy of information presented, incorporate appropriate cultural context, and address health literacy concerns. Our objective was to adapt the Early RA (rheumatoid arthritis) PtDA for use with Canadian Indigenous patients. METHODS: The Early RA PtDA was modified through an iterative process using data obtained from semi-structured interviews of two sequential cohorts of Indigenous patients with RA. Interview data were analyzed using thematic analysis. RESULTS: Seven participants provided initial feedback on the existing PtDA. The modifications they suggested were made and shared with another nine participants to confirm acceptability and provide further feedback. The first cohort suggested revisions to clarify medical and cost coverage information, include Indigenous traditional healing practice options, simplify text, and include Indigenous images and colors aligned with Canadian Indigenous community representation. Additional revisions were suggested by the second cohort to increase the legibility of the text, insert more Indigenous imagery, address formulary coverage for non-status First Nations patients, and include information about lifestyle factors in managing RA. CONCLUSION: Incorporating Indigenous-specific adaptations in the design of PtDAs may increase use and relevancy to support engagement in treatment decisions, thereby supporting health-equity oriented health service interventions. Indigenous patient-specific evidence and translation of key words into the end-users' Indigenous languages should be included for implementation of the PtDA.