Autoimmune disease coalition seeks to increase physician knowledge



WASHINGTON – Some 64% of family physicians are "uncomfortable" or "stressed" when diagnosing autoimmune disease, and almost three-quarters said they have not been given adequate training in diagnosing and treating the conditions, according to a small survey.

The survey of 130 family physicians was conducted by the American Autoimmune Related Diseases Association (AARDA) last fall. The association has queried physicians each year since the mid-1990s on a variety of issues relating to the care and treatment of patients with any one of the 100 or so diseases that fall into the autoimmune category.

Alicia Ault/Frontline Medical News

Dr. Stanley Finger

The AARDA, along with the National Coalition of Autoimmune Patient Groups, is pushing for more comprehensive autoimmune disorder centers where patients can receive focused and coordinated care from specialists who are more intimately involved with the diseases.

The autoimmune facilities would be modeled on comprehensive cancer centers.

Now, patients struggle to find specialists who can accurately diagnose and treat their conditions. "There’s no such thing as the autoimmunologist," said Stanley Finger, Ph.D., the AARDA’s vice chairman of the board, at a briefing.

Patients responding to AARDA surveys report that it takes 4-5 years to get an accurate diagnosis, and that they see an average of five physicians before they get that diagnosis. At least half of patients are labeled chronic complainers and told that their symptoms are figments of their imagination, Dr. Finger said.

But 75% say they would seek care at a specialized center if it existed.

Improving diagnosis also requires increasing physician awareness and education. In the AARDA’s most recent survey, almost 60% of family physicians said that they had only one or two lectures on autoimmune disease in medical school, said Dr. Finger, who is also president of Environmental Consulting and Investigations in Bluffton, S.C.

"It doesn’t give a lot of time for these physicians to become experts," Dr. Finger said. "Because of that, they don’t feel very good about the training they have received."

The AARDA plans to develop a syllabus for medical schools and a continuing education program to help fill physicians’ knowledge gaps.

The group also surveys about 1,000 members of the general public every 5-7 years to gauge awareness of how patients are interacting with physicians. In 1992, only 5% could name an autoimmune disease. That has increased, but only to 15%. In the first survey, 93% of the public thought AIDS was an autoimmune disease. Now, just 21% have that belief.

Borrowing another page from the cancer model, the AARDA and the coalition are seeking to establish an autoimmune disease registry that would be similar to the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) program. The SEER program compiles data about cancer incidence, mortality, and cost. It is widely used by researchers, patients, physicians, and public health agencies.

The autoimmune registry is still a work in progress. There is a huge absence of data in the autoimmune field – for example, no one knows with certainty just how many Americans have any of the various conditions, said Aaron H. Abend, the AARDA’s informatics director.

The registry would aggregate data already being compiled by various individual autoimmune associations. But the effort is in its infancy. The groups still need to agree on governance, data protocols, and other issues, Mr. Abend said. However, the registry will use software that is the standard for registries operated by the National Institutes of Health.

[email protected]

On Twitter @aliciaault

Next Article: