Understanding Patient and Physician Perspectives Regarding Innovative Research in Rheumatoid Arthritis.

Abstract

The optimal treatment choice for an individual with rheumatoid arthritis (RA) is yet unknown. Although novel approaches, such as pragmatic randomized clinical trials (pRCTs) and biomarker-driven trials are needed to advance personalized RA care, end user views of these approaches have not been extensively studied. This study aimed to gain insight into patients' and physicians' perspectives to enhance the success of future RA research innovations. As part of a larger pRCT, we conducted 3 focus groups with 17 patients with RA and 1 focus group with 5 rheumatologists from 2 major university hospitals. The discussions, which revolved around the challenges of innovative research, were transcribed verbatim and thematically analyzed adopting a self-management framework aligned with a patient engagement perspective. Patients' discussions revolved around 3 themes: (1) patients' preferences for information related to medical management decision making; (2) necessary behavior change due to treatment-related challenges; and (3) patient-physician relationship as a foundation for constructively approaching shared decision making. As for physicians, their discussion was organized into 3 themes: (1) the impact of research on medical management of a patient; (2) the feasibility of pRCT and biomarker-driven trials; and (3) how randomization could challenge shared decision making with patients. Patients and physicians shared their concerns regarding how being part of research in the setting of clinical care could disrupt day-to-day activities and threaten shared decision making. Understanding patients' and physicians' perspectives regarding pRCT and biomarker-driven trials is key to enhance the success of these research innovations.