Value frameworks have been developed to guide pricing and reimbursement decisions by key stakeholders in healthcare delivery (e.g. payers, policymakers, and providers), and to date, have been criticized for not being fully patient-centric. To evaluate the elements of treatment found to be most meaningful to rheumatoid arthritis (RA) patients, we conducted focus groups. The goal of the focus groups was to investigate how patients valued and prioritized various attributes associated with RA therapy across the treatment journey, including side effects, affordability, and cost, in their treatment decisions. We also sought to elicit recommendations for and assess the utility of a web tool to facilitate decision-making about RA treatment.
Using qualitative methods, we conducted two focus groups in January 2017 with RA patients residing in the Atlanta, GA metropolitan area. A survey research company was engaged to screen and enroll potential study participants. Patients 18 years or older with a self-reported diagnosis of moderate or severe rheumatoid arthritis (Stage 2, 3, or 4) were eligible to participate in the study. Participants were also required to speak, read, and write English fluently and to have received disease modifying anti-rheumatic drugs (DMARDs) or biologics within the past 5 years.
Each focus group lasted 90 minutes, was led by a trained facilitator and audio recorded to ensure that the thoughts, opinions, and experiences shared by the participants were accurately captured. The discussion guide was designed to investigate patients’ treatment decisions from the emergence of initial symptoms and the diagnostic experience through disease maintenance and monitoring. Participants were also asked about the utility of a web tool to help with decision-making. Audio recordings were transcribed verbatim and analyzed utilizing thematic analysis by project team members with graduate training in qualitative data analysis to identify factors in treatment decision making that RA patients considered most important and to determine which aspects of care were most relevant.
A total of 15 patients participated in the two focus groups, with demographic characteristics well-balanced across the study population. Participants were on average 55 years of age (Range: 44-73), 40% male and 60% female, predominantly Caucasian (73%), and had been living with RA for an average of 9.9 years (Range: 2-30). The technical report details participant sociodemographic characteristics.
The focus groups identified multiple factors as both facilitators to and barriers to value in RA treatment as well as specific attributes of treatment most meaningful to patients that could potentially be incorporated into the OSVP IVI-RA model. Qualitative data analysis revealed three overarching themes: (1) RA patients face significant challenges associated with assessing treatment effectiveness throughout the course of disease (2) RA patients value treatment and care that addresses their functional status and daily quality of life, and (3) patients avoid treatment if they find it to be too cumbersome or costly. Further, any tool that can help with decision making should take into consideration how a given treatment may benefit or harm a patient, how much it will cost the patient, and who is recommending the tool and why.