Claire Barber, MD, on Using Patient Aids for Rheumatoid Arthritis Care

Claire Barber, MD,  discusses the lessons learned from her research into the use of patient aids and shared decision making among patients with rheumatoid arthritis and their health care providers.

Claire Barber, MD, is a rheumatologist from the Cumming School of Medicine at the University of Calgary in Calgary, Alberta, Canada.



I'm Claire Barber, and I'm a rheumatologist at the University of Calgary and a research scientist with Arthritis Research Canada. I'm here to talk to you today about a paper entitled, "Development of an Implementation Strategy for Patient Decision Aids in Rheumatoid Arthritis Through Application of the Behavior Change Wheel."

This was a study that we led in partnership with our patient research partners from the Canadian Arthritis Patient Alliance. In this study, we wanted to understand what some of the barriers and facilitators were to patient decision aids. We interviewed 15 healthcare providers and 15 people living with RA, and these individuals were recruited across Canada.

We conducted semistructured interviews, and then used inductive thematic analysis, which is looking at different similarities and differences across the interviews to outline some themes to try and understand individuals' perspectives on patient decision needs for early rheumatoid arthritis.

We did provide people with an example of a decision aid but asked them in general about how they might be interested in using them and what they saw as potential facilitators and barriers to this. Through this, we outlined a number of lessons learned from these individuals across Canada.

There were 5 main lessons learned, including the first lesson, which was that paternalistic decision‑making is a dominant practice compared to shared decision‑making in early arthritis care.

For example, many physicians felt that if they felt that triple therapy, meaning methotrexate, hydroxychloroquine, and sulfasalazine, was the best treatment for individuals with rheumatoid arthritis, why would they consider prescribing anything else?

The second lesson learned was that people living with RA need emotional support and access to educational tools to facilitate participation in shared decision‑making, especially following initial diagnosis.

We heard, especially from patients, that after receiving a diagnosis is a time of shock and the struggle to take in information about the diagnosis. That may not be the most appropriate time for them to be receiving a lot of information about all their treatment decisions.

The third lesson from our qualitative study was that there are many logistical barriers to shared decision‑making and patient decision aid implementation in current models of arthritis care.

We heard that things like time, and resource use, ability to have multidisciplinary team support, were all potential logistical barriers to implementing decision aids in arthritis care.

The fourth lesson was that flexibility is a necessity for successful implementation of patient decision aids. This refers to the fact that across Canada, or even within the same institution, there may be rheumatologists practicing in very different ways and who may use decision aids or participate in shared decision‑making with patients in different ways.

The last lesson that we learned was that health care providers have, unfortunately, limited interest in further training opportunities for patient decision aid use. Many of them suggested that they just wanted a quick email from, say, the Canadian Rheumatology Association to learn about this but felt that they already had the necessary skills to implement it.

Taking that, we ended up mapping these lessons learned onto a tool called the behavior change wheel to get a good sense of where these potential barriers lay and to develop some thoughts about how to intervene. We came up with a number of recommendations to help address some of these barriers.

The first was to make patient decision aids directly available to patients and provide education on shared decision‑making through websites or through information provided by patient support programs and social media to patients so that they could have easy access to this. This would help address some of the barriers.

The second was to try and create a shared decision‑making curriculum in rheumatology to try and foster change from the ground up with our young rheumatologists who are being trained and coming up.

The third recommendation was to try and leverage allied health care team members as decision coaches, or using patient partners as peer support to try and help create an environment that fostered shared decision‑making.

The next was linkage of patient decision aids to living rheumatology guidelines and embedding shared decision‑making through the use of patient decision aids within care pathways, ideally within electronic medical records.

The final recommendation was to try and support the design of future trials in patient decision aids and shared decision‑making in rheumatology to help evaluate patient‑important outcomes and to help bolster the evidence for their use, which would encourage rheumatologists who may be more skeptical in the benefits.

Thank you for taking the time to chat with me today about this.