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According to data from the Arthritis Foundation, an estimated 1.5 million individuals in the United States have rheumatoid arthritis (RA),1 with a global prevalence of approximately 0.5% to 1.0% of the population, making it one of the most common autoimmune inflammatory diseases worldwide.2
Previous research has indicated that low public awareness and lack of public education are the drivers of gaps (such as delays in seeking medical advice) in the care of patients with RA and its associated comorbidities.2
In light of RA Awareness Day, held on February 2, 2021, we spoke with researchers and rheumatologists on the guidance they provide to patients with RA and the ways that they are recognizing and raising awareness of the disorder.
Perspectives From Rheumatology Experts
Daniel H. Solomon, MD, MPH, chief of the Section of Clinical Sciences in the Division of Rheumatology at Brigham and Women’s Hospital in Boston, routinely offers his patients educational materials from the American College of Rheumatology (ACR) and the Arthritis Foundation.
Regarding guidance to patients with RA during the coronavirus disease 2019 (COVID-19) pandemic, he noted, “The [ACR] recommends continuing your treatments for RA. If you are diagnosed with COVID-19, then consult with your rheumatologist about whether to continue your treatments. Everyone should strongly consider being vaccinated.”
We asked Dr Solomon how he was showing his support on RA Awareness Day this year, to which he said, “At Brigham and Women’s Hospital, we care for approximately 3000 patients with RA. We have one of the largest RA practices in the US and the world. We focus on providing patient-centric care for our patients through outstanding rheumatic disease providers. We also are at the cutting edge of research with many ongoing treatment trials and other research studies. In addition, we provide education through several rheumatology nurses and patient support programs. We see that RA Awareness Day is an extension of all the work we do every day at Brigham and Women’s Hospital.”
He also added, “Rheumatology professionals routinely go above and beyond for patients with RA. They provide emotional and physical support for people living with a chronic illness. In support of RA Awareness Day, they can make sure that patients with RA know that they are being celebrated during February.”
W. Benjamin Nowell, PhD, director of patient-centered research at CreakyJoints and principal investigator of ArthritisPower®, provided insight into the available resources for patients with RA and their rheumatologists in light of RA Awareness Day.
“At CreakyJoints, we provide education, support, and access to arthritis research opportunities, every day of the year. For people [recently diagnosed] with RA, I’d encourage them to start with our comprehensive free guide called A Patient’s Guide to Living with RA, so that they can educate themselves on the breadth of RA management and treatment strategies. Then, I’d encourage them and all people living with RA to join our ArthritisPower Research Registry, which will allow them to monitor and track their experience of symptoms and treatment. These data can be shared with [patients’] rheumatologists to facilitate shared decision-making during appointments, and patients can also participate in research studies that will improve our overall understanding of arthritis.”
Dr Nowell encourages rheumatologists to sign up for newsletters from CreakyJoints and participate in their social media events to keep track of the concerns and questions from the arthritis community. He also encourages rheumatologists to recommend ArthritisPower to their patients to improve disease management.
During the COVID-19 pandemic, CreakyJoints and the parent organization, the Global Healthy Living Foundation, have invested in developing comprehensive, evidence-based information for people living with chronic diseases, including arthritis. The Patient Support Program has been providing information on clarifying myths surrounding the COVID-19 vaccines.
Dr Nowell indicated, “Importantly, the pandemic helped foster improved access and utilization of telemedicine. In response, we recently launched a portal that defines telehealth and how rheumatologists utilize it, describes different video conferencing portals, and explains how to make the most of your next appointment.”
From a research perspective, Dr Nowell speaks of the Autoimmune COVID-19 Project, a longitudinal study that includes patients with arthritis, multiple sclerosis, Crohn disease, colitis, and vasculitis, to track the evolving effect of COVID-19 on these patients. Data from this program have been presented and published.
Stanley B. Cohen, MD, a clinical professor in the Department of Internal Medicine at the University of Texas Southwestern Medical School and co-director of the Division of Rheumatology at Presbyterian Hospital in Dallas, commented on clarifying myths among patients with RA by “[e]ducating patients about their disease/prognosis and steering them [toward] appropriate resources to better educate them on proper approaches to treatment.” He added that [rheumatologists] should make efforts to discuss the lack of clinical evidence behind “bogus treatments” with patients.
Allan Gibofsky, MD, a professor of medicine, healthcare policy, and research at Weill Medical College of Cornell University and an attending rheumatologist at the Hospital for Special Surgery (HSS), shares information and educational materials developed by the HSS, the ACR, the Arthritis Foundation, and CreakyJoints with his patients.
Dr Gibofsky’s advice to patients with RA during the current pandemic is “[to] continue to follow all mask and social distancing protocols as recommended by public health authorities.” He added, “In addition, patients should not stop or adjust their medications without consulting with their physician. Finally, the current evidence suggests that patients with RA should receive a vaccine as soon as it becomes available to them.”
In a message to rheumatology professionals on RA Awareness Day, Dr Gibofsky emphasized, “Every [healthcare provider] should be aware of the impact of RA, not just as a disease affecting the joints but as an illness that affects quality of life. We can take a moment to reflect on the famous teaching that the role of a physician is to cure a few, help most, but comfort all.”
On a personal note, Dr Gibofsky said, “I am reminding myself today that while this may be identified as ‘RA Awareness Day’ for me, my patients are aware of their RA every day of their lives.”
References
- Arthritis Foundation. Rheumatoid Arthritis. Accessed on January 29, 2020. https://www.arthritis.org/diseases/rheumatoid-arthritis
- Kvien TK, Balsa A, Betteridge N, et al. Considerations for improving quality of care of patients with rheumatoid arthritis and associated comorbidities. RMD Open. 2020;6:e001211. doi:10.1136/rmdopen-2020-001211
