"Rheumatoid Disease" Advocates Offer New Name, New Focus on RA

According to the Rheumatoid Patient Foundation, most people – even many people with rheumatoid arthritis (RA) – have difficulty distinguishing the condition from osteoarthritis (OA), even though they are two completely different diseases.

The RPF, a 501(c)3 non-profit founded in 2011, wants clinicians and patients to think of RA as “Rheumatoid Disease,” to highlight the fact that it is a progressive, autoimmune, joint-destroying process, as opposed to the age-related breakdown of cartilage in joints affected by OA.

RPF is promoting Sunday, February 2, 2014, as its second annual “Rheumatoid Awareness Day” aimed at getting that message across.

RPF founder Kelly Young, herself diagnosed with the disease in 2006, explains that because RA is always linked to the umbrella term “arthritis” it causes problems for patients struggling to have clinicians recognize their specific symptoms.

“The public is confused by referring to it as ‘a type of arthritis,’ which can lead to many other difficulties for patients with rheumatoid disease, such as getting tests or treatments paid for,” says Young. “Most clinicians seem to be unaware of the many ways the disease affects patients, especially beyond the joints.”

Confusion and lack of awareness not only causes problems with getting a diagnosis and good clinical care, it also has an impact on disability accommodations, healthcare costs, and research funding, says the Florida-based patient advocate and mother of five. “We believe rheumatoid disease is the more accurate term.”

Small Joints, Big Disease Differences

“Arthritis is a general term meaning inflammation of joints. Because many diseases can cause joint inflammation, it can become confusing to talk about,” agrees John M. Davis, III MD, an assistant professor of medicine at the Mayo Clinic who joined the RPF advisory board.

“Rheumatoid arthritis is a systemic inflammatory disease that principally affects joints but also can cause disease in body systems outside the joints, such as the eyes, lungs, skin, or lungs. So there is need for patient education tailored specifically to the issues faced by patients with rheumatoid arthritis,” he says.

Young jump-started the educational effort in 2009 by establishing Rheumatoid Arthritis Warrior (www.rawarrior.com ), an interactive informational web site for patients.

On the site, patients and clinicians can find more than 800 pages of news articles, editorials, blogs, and disease-management tools. The website's Facebook group has over 27,000 members, she says.

Mining the Patient Experience

Kelly has already mined information from patients to uncover a little-recognized aspect of RA, presenting the findings with two co-authors at the annual ACR Scientific Meeting in San Diego in 2013.

Their 2011 web-based survey of more than 2,000 patients with self-reported RA revealed what the authors called a previously unrecognized “recovery period” that limits function after physical activity in RA.

In addition to items about specific tasks such as shampooing hair or climbing stairs in the frequently used Health Assessment Questionnaire (HAQ), the study added questions about the consequences of performing those tasks. For example, 66% of survey respondents said that for a period of time after climbing stairs they would move with “much” or “some” increased difficulty.

The HAQ does not take the effects of such as “recovery period” on everyday activitiesinto account. As a consequence, the study authors observe, “patient responses on the HAQ may reflect a higher health-related quality-of-life score than patients actually experience."

“The tools of physicians are not always sensitive enough to measure it [the disease],” comments Dr. Davis. “I think we need new approaches of shared decision making to determine how to ameliorate the discrepancy and select management strategies that ultimately improve patients’ outcomes and quality of life.” 

The RPF has published a White Paper based on its own survey data, which details the problems that patients typically experience. These are often vastly different from what is reflected in the medical literature as “typical RA,” Young remarks.

A Focus on the Heart

This year’s “Rheumatoid Awareness Day” was timed to coincide with national heart month in February to spotlight the need for more research into cardiovascular disease in RA.

“One idea is that similar pathways of inflammation are involved in both atherosclerosis and rheumatoid arthritis,” says Mayo Clinic's Davis. “The initiation and perpetuation of inflammation, even before a person develops signs or symptoms of inflammation, may in the context of other factors contribute to cardiovascular diseases.”  

In fact, he says the Mayo Clinic is developing a "Cardio-Rheum Clinic” in which patients are evaluated jointly by their rheumatologist and by a preventive cardiologist with special interest in autoimmune rheumatic diseases.  The ultimate goal, he adds, is to devise best practices.