Adaptation of a Shared Decision-Making Tool for Early Rheumatoid Arthritis Treatment Decisions with Indigenous Patients
Authors: Valerie Umaefulam, Terri-Lynn Fox, Glen Hazlewood, Nick Bansback, Claire E. H. Barber & Cheryl Barnabe
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.
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.
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.
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.
Key Points for Decision Makers
|Culturally appropriate and relevant decision-making tools for Indigenous patients to support patient-focused care are proposed as a way to reduce inequities in rheumatoid arthritis care.|
The study advances knowledge of the features to be addressed and included in patient decision aids to enhance engagement, acceptability, and relevance for Indigenous patients.