Background Current rheumatoid arthritis (RA) treatment guidelines suggest aggressive management in order to minimize disease activity. To achieve this goal, clinicians will need to engage patients in shared decision making. Currently little is known regarding patient's preferences and goals for treatment.
Objectives To understand patient perspectives on their goals with regard to RA disease and flare management and the barriers to, and facilitators of achieving those goals.
Methods Participants were interviewed utilizing open-ended questions focused on understanding their goals of managing their disease (both disease flares and longstanding disease) as well as the barriers and facilitators of achieving those goals. We explored the following: disease impact; disease beliefs and behaviors; medication use; provider relationship and communication; availability of insurance coverage; and community resources. Interviews were recorded and transcribed. Data were categorized using content analysis techniques. Convenience sample of persons living with rheumatologist-diagnosed RA was recruited from rheumatology practices in 4 states to participate in telephone interviews.
Results Twenty-seven participants completed an interview from March-August 2015. Mean age was 63 years; 82% were female and 82% Non-Hispanic White. Participants reported living with RA for an average of 12 years and 44% reported that their RA was not well controlled. The most common participant goal was to improve or maintain physical function. Barriers to RA and flare management included: 1) Patient Level- lack of knowledge of how to manage flares and a reluctance to change or use medications, related to concerns about potential side effects, and limited understanding of the potential benefits; 2) Provider Level- inadequate communication between patient and provider, specifically in relation to flare management and; 3) Health System Level- difficulty navigating insurance, handling coverage gaps, affording high medication costs. Facilitators of RA and Flare management included: 1) Patient Level- successful use of non-medication approaches to disease management and the willingness to initiate conversation with their provider about changing medications and; 2) Provider Level- a positive relationship with their provider, including having trust in the provider, easy access to the provider, and positive communication.
Conclusions We identified patient-, provider and health system-barriers and facilitators experienced by RA patients achieving their treatment goals. A common theme that emerged was inadequate shared decision making between patients and their providers related to lack of patient knowledge, inadequate communication, and mistrust.
Disclosure of Interest C. Lemay Grant/research support from: Pfizer Inc, K. Mazor Grant/research support from: Pfizer Inc, J. Kremer Shareholder of: Corrona, Grant/research support from: Abbvie, Genentech, Lilly, Novartis, Pfizer, Employee of: Corrona, Speakers bureau: Genentech (non-promotional only, W. B. Nowell: None declared, C. Bingham III Consultant for: Bristol-Myers Squibb, J. Curtis Grant/research support from: Roche/Genentech, UCB, Janssen, Corrona, Amgen, Pfizer, BMS, Crescendo, AbbVie, Consultant for: Roche/Genentech, UCB, Janssen, Corrona, Amgen, Pfizer, BMS, Crescendo, AbbVie, E. Ruderman Grant/research support from: Pfizer Inc, Amgen, Consultant for: AbbVie, Amgen, Lilly, Novartis Pharmaceutical Corporation, Pfizer Inc., Janssen Pharmaceutica Product, L.P., L. Harrold Shareholder of: Corrona, Grant/research support from: Pfizer Inc, Consultant for: Roche Pharmaceuticals, Employee of: Corrona