Lupus Initiative Using CDC Grant to Educate Patients, Care Providers

Malika Ammam, PhD avatar

by Malika Ammam, PhD |

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The Lupus Initiative (TLI) of The American College of Rheumatology (ACR) was awarded a five-year grant by The Centers for Disease Control and Prevention (CDC). The money will go to supporting development of a national, grassroots program aiming to target individuals with undiagnosed lupus, care providers, and rheumatology healthcare providers.

From a diagnostic point of view, lupus is a chronic and complex disorder that is often difficult to pinpoint as many of its symptoms are similar to those of other diseases. There is no definite laboratory test to determine if a patient indeed has the disease, so that several years may pass before a proper diagnostic is reached.

“Not only is Lupus often misdiagnosed, but patients commonly see at least three providers before diagnosis, many of whom are primary and emergency care providers who haven’t received significant training in diagnosing Lupus,” Sheryl McCalla, TLI Project Director and ACR Senior Director, Collaborative Initiatives, stated in a press release. “These providers may have received an average of 90 minutes of training on Lupus in the first and second years of medical school combined. This often contributes to delays in timely and accurate diagnosis, both of which are critical to helping patients manage and live with this condition. We are hoping to change that by educating both the public and providers on what to look for and the best steps to take when they suspect Lupus.”

The initiative’s primary goal is to ensure that healthcare providers have the necessary tools to provide better diagnostic/management, and patients have proper educational awareness about the disease. To reach this goal, three main components have been included in the program: 1) efficient distribution of current educational/training materials on lupus to relevant organizations throughout the country, 2) public awareness campaigns aiming to identify signs/symptoms of lupus for medical diagnosis, and 3) establishment of community-tailored activities in selected communities during the first year.

The first phase of this program involves a collaboration between ACR and The Lupus Foundation of America, expected to start  this month (November 2015). Material resources contain a variety of lupus-related information intended for both healthcare providers and patients,  including certification, cases studies, and videos or PowerPoint presentations for care providers and  educational resources on symptoms/disease management for patients. The content was developed and reviewed by a body of experts in rheumatology, dermatology, nephrology, and health disparities.

“We have made great strides in the many communities that are already utilizing these materials to educate their providers and community, so we’re happy to now have the resources to expand this program nationally — particularly to those areas that currently have a shortage of rheumatologists trained to treat lupus,” McCalla said.

This undertaking should help in early detection and lupus diagnose, particularly among racial minorities where higher prevalence and mortality are recorded. To help guarantee its success, a number of organizations and societies, including 25 rheumatology state societies, area health education centers, Arthritis Foundation chapters and the National Association of Chronic Disease Directors, have already committed to participate.