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Jennifer L Barton, MD, on Goal Elicitation for Patients with RA
Jennifer L Barton, MD, MCR, the Rheumatology Section Chief at the VA Portland Care System and associate professor of medicine at Oregon Health & Science University, met with us to talk about her research on developing a rheumatoid arthritis goal elicitation tool for patients and providers to utilize.
RALN: Can you explain what “goal setting” means, with regards to treatment of patients with rheumatoid arthritis (RA). Why is it so important?
Dr. Barton: Our study focused on goal elicitation, which basically means that clinicians ask patients what their individual goals are for the treatment of rheumatoid arthritis. Clinicians often follow treatment guidelines for RA which recommend treating to a “target” of low disease activity or remission using an accepted composite disease activity measure. When we searched the literature to better understand what patient goals for treatment are, we identified over 400 goals. Patient and clinician goals do not always align and that is why talking about goals is important. Goal setting refers to a discussion between patient and clinician about what matters most to the patient and identifying an endpoint that is achievable and realistic (e.g., be able to walk for 10-15 minutes three times a week; attend a family member’s wedding in 3 months, etc).
Prior literature in other chronic conditions such as diabetes has shown that when patient and clinician agree on prioritization of goals, outcomes improve. It’s important for both patients and their clinicians to clearly communicate about what matters most.
RALN: What brought you and your colleagues to investigate this area of RA treatment?
Dr. Barton: In prior work that involved designing a multi-lingual, low literacy decision aid for persons with rheumatoid arthritis and their clinicians, we talked with patients and clinicians about what was most important to them when they considered treatment options for RA. During this phase of development, it became clear that for many patients, not having RA or not having to take RA medications was a goal for them. Clinicians felt that a tool to help them talk with patients about their goals would be helpful to initiate conversations about what would be the best choice of medication after monotherapy with methotrexate had failed. In an effort to improve communication around goals and finding that patients and clinicians are not always on the same page, we set out to develop a goal elicitation tool.
RALN: Would you give us an overview of this study and what it revealed? What do you think were the most important findings?
Dr. Barton: This study to develop a goal elicitation tool for persons with RA involved 3 main steps: (1) clinician feedback on the initial prototype during a communication training session, (2) interviews with RA patients,(3) community stakeholder feedback on elements of the goal elicitation tool in a group setting and electronically.Through these steps we created iterations of the tool and altered what was presented, how it was presented and learned about how clinicians view the overall concept of goal elicitation.
We learned that patients viewed all of the goals listed in the tool as important. They liked the idea of having a tool to help them prepare for their visits with the rheumatologist. The tool was easy to use and interpret. Clinicians acknowledged the importance of talking about goals but identified potential barriers of not having enough time or resources to help patients with their goals. In the end, we concluded that a goal elicitation tool can provide a structured way to communicate patient goals within a clinic visit and help overcome barriers such as time constraints.
RALN: What was the process for creating the initial prototype? How did you arrive at the 7 themes (pain, work, daily activities, side effects, sleep, tiredness, and mood) included in the tool?
Dr. Barton: In our prior work, we conducted a systematic review of patient goals (identifying over 400) and had focus groups with patients and clinicians to better understand their goals for RA treatment, how they were similar and how they differed. The 7 named goals and “other” were derived from the systematic review. When we interviewed patients and inquired as to whether there was a goal missing or if they would change them. We also trialed different designs and images or icons representing the goals. We aimed to limit text on the tool and to prioritize plain language that could be understood by individuals across health literacy levels.
RALN: In the third phase of the development, you say that you sought feedback from “community stakeholders.” Who did that include, and why did you feel it was important to get their input?
Dr. Barton: We presented the tool to a local Veteran engagement group that provides feedback on research works in progress. Feedback from people who engage with health care and understand research can be extremely valuable. Was the tool easy to understand for persons who did not have RA (which could represent family members or friends in the real world setting)? Were there design elements that could be improved? Were icons clear? Having input from this group also lends support for the tool to be used in non-RA settings as well.
RALN: In your abstract, you mention that feedback brought up “barriers to implementation that the tool could itself resolve.” Can you expand on what those barriers are, and how the tool would resolve them?
Dr. Barton: Clinicians identified high caseload burden and time limitations during a rheumatology visit as barriers. The also noted that several of the goals listed on the tool were outside of one’s practice scope. Lack of systemic support or referral resources were also cited as barriers, even though they recognized that patients often bring up concerns of mood or poor sleep during the appointment.
We propose that having a goal elicitation tool would actually be a time-saver. Patients could organize their thoughts and concerns and note them on the tool prior to the visit and then with one glance, the clinician could see what their main goals for their RA treatment were that day, or if something more pressing was on their mind (loss of a spouse, change in job, a problem with medication) that they may not feel the agency to mention at the beginning (the average time a patient speaks before being interrupted by their doctor is between 11 and 18 seconds depending on the study cited – patients often do not have the opportunity or invitation to express what really matters to them).
The tool cannot change the system shortfalls of lack of resources (social work, coordinated care with mental health or other services) but it is a potential starting point to identify patient goals which in some clinical settings could be addressed with outreach to the primary care clinician, a referral to mental health or sleep clinic. The tool may also address things in the visit that would otherwise arise in between visits, and that create more asynchronous communication (e.g., MyChart messages) and work that could be avoided by using the tool. Increase in patient satisfaction with their experience and increase in self-efficacy may improve outcomes as well.
RALN: What are the overall benefits of this tool? How can it improve patient and provider experience?
Dr. Barton: The tool facilitates communication between patient and clinician; it provides patients with sentence starters for potentially difficult conversations with busy clinicians who may be focused on their own agenda. The structured tool helps patients prioritize goals and invites them to more actively participate in conversations around their care, thus facilitating meaningful shared decision making. While clinicians are well-meaning, they do not always truly engage in shared decision making which involves acknowledging there is more than one way forward, eliciting patient values and preferences, discussing risks and benefit of options and then working together to identify the best option.
RALN: What recommendations would you make for providers, based on the findings of this study (other than implementation of this tool, of course)? Are there currently any other tools available to guide communication and goal-setting between patients with RA and their providers?
Dr. Barton: A number of decision aids or conversation aids for RA have been developed. Tools are one intervention we have to facilitate better communication in the clinical setting; clinician communication training as well as patient activation are other interventions which can improve conversations. The study highlights that it is essential to create interventions with inputs from patients as well as clinicians as a tool must be acceptable and easy to use. Even without a tool, I would recommend that clinicians always open a conversation with a patient by asking what is on their mind that day, what is their goal for the visit? To quote a dear colleague, Dr. Victor Montori of the Mayo Clinic, we need to see our patients in “high definition” – each person in their own context in that own moment in their own situation and work together to move them through – to a better place. But to do that we really need to understand their situation, to listen, to be present, and arrive at a plan together.
RALN: Are there any next steps or further research planned for this project?
Dr. Barton: At the time we completed the tool development, we were about to launch a study to examine whether the tool could improve goal concordance (or agreement) between persons with RA and rheumatology clinicians. Then our plans were derailed with the onset of the pandemic. The tool could certainly be adapted to a digital form, however the act of writing, reading and then sharing an actual paper artifact in a clinical encounter can help foster conversation away from the computer which can sometimes detract from one’s ability to listen and be fully present.
We hope to work with interested clinicians and researchers to further pilot the tool in real-world settings and improve communication and quality of care for all.
References:
Kahler J, Mastarone G, Matsumoto R, ZuZero D, Dougherty J, Barton JL.“It may help you to know…”: The early-phase qualitative development of a rheumatoid arthritis goal elicitation tool. Rheumatology. 2022;49(2):142-149. doi:10.3899/jrheum.201615
Mathijssen EGE, Vriezekolk JE, Popa CD, van den Bemt BJF. Shared decision making in routine clinical care of patients with rheumatoid arthritis: an assessment of audio-recorded consultations. Ann Rheum Dis. 2020;79(2):170-175. doi:10.1136/annrheumdis-2019-216137
Allwood D, Koka S, Armbruster R, et al. BMJ Leader. Published Online First: August 4, 2021. doi:10.1136/ leader-2021-000451
Ratanawongsa N, Barton JL, Lyles CR, et al. Association between clinician computer use and communication with patients in safety-net clinics. JAMA Intern Med. 2016;176(1):125-128. doi:10.1001/jamainternmed.2015.6186
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