Having rheumatoid arthritis (RA) is a full-time job. We could all use a coach to guide us in even just one aspect of life with RA. Even sports GOATs like Serena Williams and Simone Biles have been guided by coaches throughout their careers. Yes, we have rheumatologists and primary care physicians to manage our care, but there is something very unique about having a peer coach who actually understands your pain and relates to your challenges.
In a new study, presented at ACR Convergence 2022, the annual meeting of the American College of Rheumatology, peer coaches were trained in using a cardiovascular risk assessment intervention with fellow rheumatoid arthritis patients and the results are a win for peer coaches, participants, and physicians alike. I am honored to be one of the peer coaches in this initial study.
About the Study
Rheumatoid arthritis-related inflammation can impact the heart and blood vessels, raising the risk of cardiovascular disease (CVD) in RA patients — and, yet, only a third (37 percent) of patients with RA are screened for CVD risk. How can people who are unaware of their increased CVD risk become informed and prompted to take action in their health care and avoid a potential heart attack or stroke?
To improve CVD prevention, the research team at Weill Cornell Medicine, led by Dr. Iris Navarro-Millan, partnered with the Global Healthy Living Foundation to design the CArdiovascular Risk assEssment for patients with Rheumatoid Arthritis (CARE RA) intervention. The program consists of patient education content guided by a peer coach who also has RA.
Peer coaches were trained in curriculum on RA and CVD and in motivational interviewing to ensure that conversations between coaches and peers were supportive and productive. The peer coach and participant talked weekly for four weeks prior to the participant’s appointment with their rheumatologist. They had a fifth call the week after the participant’s doctor’s appointment.
During each call, the peer coach and participant talked about the educational content, including strategies for minimizing CVD risk, such as eating a balanced diet, exercising regularly, taking your RA medicines regularly, and talking with your doctor about getting a cholesterol test. The content was all leading up to the participant asking their rheumatologist for a cholesterol test. To find out whether having a peer coach was truly helpful, the study also had a “control” arm in which participants had the same RA and CVD curriculum but without the support of a peer coach. This enabled researchers to compare the two groups: peer coach intervention vs. control.
A total of 60 participants were in the study. At the one-week mark, 22 participants with a peer coach (in CARE RA) versus 18 in the control group received a CVD risk assessment. By three months, all participants who completed CARE RA had a CVD risk assessment, with five of them initiating lipid lowering therapy (LLT) such as taking a statin. None of the participants in the control arm initiated LLT. Four participants dropped out from CARE RA and four dropped out from the control arm.
“CARE RA is a pilot study,” explains Dr. Navarro-Millan. “The results of this pilot have been extremely informative in terms of how we can address the patients’ needs to monitor their cardiovascular health with the help of a peer coach. It’s very easy to get patients to get their cholesterol checked. What we need to ask is, ‘Can we get people who need to get started on a statin [to control cholesterol] actually started on a statin?’”
These are preliminary findings, but initial results suggest that peer coaches have a positive impact on patients with rheumatoid arthritis and leads to greater awareness of cardiovascular disease risk.
My Experience as a Patient Researcher
For me, becoming a peer coach was a rigorous yet rewarding process. I began this journey back in the fall of 2020. Interactions with the study team and other peer coaches have been through online meetings and phone calls, yet we have become like family. Being part of CARE RA has truly been a collaboration between the research team members and peer coaches. From the very beginning, peer coaches were invited to share input on the content and delivery of the intervention. The research team held focus groups with participants to learn more about how impactful the program was for them personally — and how it could become better for future participants.
There are many benefits of being a peer coach in this study. The curriculum itself inspired me to recheck my own CVD risk every year and to take a more active role in preventing a heart attack or stroke. Interacting with participants from all over the United States has been a valuable experience, showing me how each person has a unique outlook on life and on living with RA.
The experience also made me realize how people living with RA can make great contributions to research and the care of patients — and Dr. Navarro-Millan agrees: “Peer coaches, peer coaches, peer coaches!” she exclaims. One of her goals is to build a portfolio of peer coaches who are given opportunities to ask scientific questions and contribute to research, which benefits patients, doctors, and researchers everywhere.
We spoke with Dr. Navarro-Millan about the impact the study has had (and will have) in the future of RA care.
CJ: How do you plan to utilize the outcomes from this study? Where will you take it from here?
Dr. Navarro-Millan: “We need to do more refinement in the intervention to test how effective this intervention is in not only getting a cardiovascular (CVD) risk assessment done but also to get patients and doctors engaged in conversation to initiate a statin or not. We are in the process of looking at the program data to make the program more robust. The long-term goal is to help CARE RA to be self-sufficient. It could become a prescription by providers like a supplement to treatment.
“The ultimate goal is to prevent the incidence of stroke and CVD in patients with RA and delay mortality, [so] people can live their life to their fullest in the most functional way despite having RA. We’ve been brainstorming how to tackle this problem for a long time; hopefully engaging patients with peer coaches is a good contribution.”
CJ: Why are these findings important to you and to patients with rheumatoid arthritis?
Dr. Navarro-Millan: “Our findings are important for multiple reasons. I don’t treat diseases; I treat people with diseases. Unfortunately, with RA, people only focus on joint swelling, joint pain, but people with RA do not only associate with joint pain and swelling. We need to further explore beyond the joint into the lungs, into the eyes, heart, and other manifestations. We need to explore beyond the joints and CARE RA allows for that. We need to empower the physicians to discuss [CVD} with patients because it’s the number-one killer of patients with RA.”
CJ: What did you learn from this study that surprised you?
Dr. Navarro-Millan: “Something I didn’t see coming is how physicians are responding to patients asking for a cholesterol test. I did not think that a peer coach would be able to change physician’s behavior to this magnitude. For example, a physician thanked me because the patient reminded her to run a cholesterol test to check their ASCVD [risk of atherosclerotic CVD] and now that doctor will do that for all patients.”
CJ: What do you want readers to glean from your work?
Dr. Navarro-Millan: “For patients, to become aware of cardiovascular disease and that they should pay attention to their cardiac health. For physicians, the same applies with a twist. Yes, you are a rheumatologist, but you can play a role in cardiovascular health for your patients. It’s not an additional burden, but an opportunity to make a simple effort with a huge effect. Physicians and researchers look into the patient’s experience with joint pain and stiffness, but they don’t ask about their lifestyle and their increased risk for heart attack and stroke.”
Be Part of Research with ArthritisPower
Join CreakyJoints’ patient-centered research registry and participate in voluntary studies about managing arthritis. Learn more and sign up here.
Interview with Iris Navarro-Millan, MD, MSPH.
Navarro-Millan I, et al. Peer Coach Intervention to Improve Primary Cardiovascular Disease Screening for Patients with Rheumatoid Arthritis [abstract]. Arthritis & Rheumatology. November 2022. https://acrabstracts.org/abstract/peer-coach-intervention-to-improve-primary-cardiovascular-disease-screening-for-patients-with-rheumatoid-arthritis.