Exploring Rheumatoid Arthritis Patients' Needs in Shared Decision Making: A Qualitative User Needs Study

Abstract

Background: Rheumatoid arthritis (RA) is a chronic inflammatory debilitating joint condition with individualized symptom severity. Access to multiple medication choices allow consideration of patient preferences and fit to their lifestyles. Shared decision making (SDM) is a recent approach in medicine where medical decisions are formed in combination of latest scientific evidence, patient’s lived experiences, and physician’s clinical expertise. SDM may be a fitting approach for RA due to the extended time allowed for developing patient-physician rapport, room to discuss patient preferences, and decisions to be revisited. Objective: To explore user needs and challenges to support RA patients in shared decision-making processes as it relates to chronic disease management, self-monitoring, and medication choices. Methods: Semi-structured interviews were conducted with RA patients (n=13) recruited from the Canadian Arthritis Patient Alliance. Thematic analysis was performed using NVivo software. Data was coded inductively and iterated on until no new themes emerged. Results: Three main themes emerged from interview data. (1) Gaps in Psychosocial Care: Relevant to short and long-term medication side effects, sexual health, mental health, and family planning were sensitive and stigmatized topics which were often dismissed at the rheumatologist’s visits. (2) Patient Agency: RA patients were exercising patient agency needed for SDM through proactively seeking knowledge about their disease; making personal judgements on medications based on their symptoms; and relying on their social support networks for tough decisions. (3) Adaptations: Over years of dealing with RA, patients reported adaptations, such as flexibility to psychological adaptations, improved general health through modifiable lifestyle factors, and several minor ergonomic changes for improved daily comfort. Conclusion: Designs in health technology to support RA patients with SDM may benefit by acknowledging the dynamic nature of RA as a chronic disease. Further socio-technologic developments can minimize the burden of living with RA.