The Stanford arthritis program "was the basis for the Arthritis Foundation’s self-help program in the 1980s, and thus many health professionals and patient volunteers used it," Dr. Iversen said in an interview. Writing in a review of self-management last year, Dr. Iversen and her associates said that "self-management programs are now acknowledged as a key element of quality care" for patients with OA, RA, and other chronic diseases. The unaddressed issues today include whether the benefits from self-management training extend long term, and whether any patient attributes are linked with better outcomes following training, they wrote (Ann. Rheum. Dis. 2010;69:955-63).
"There are many ways for patients to get self-help, but from the standpoint of having the data, [the Stanford programs] are the best for both arthritis and chronic disease," said Dr. White.
The Stanford program "is the most popular. It has been well studied and popularized by the Arthritis Foundation and the CDC," said Dr. Daniel H. Solomon, a rheumatologist at Brigham and Women’s Hospital in Boston. But that "most popular" characterization is relative: The program’s popularity drops precipitously inside the offices of many rheumatologists and primary care physicians. Major issues seem to be skepticism about efficacy; questions about the need for formal programs; and a lack of awareness about self-management, time to make a referral, and knowledge about where to refer.
"I doubt many rheumatologists regularly refer patients to such programs. It is hard to argue with such programs, but few rheumatologists view them as beneficial. They are clearly nontoxic, but how beneficial they are can be debated," said Dr. Solomon. Several years ago, he headed a controlled study with 113 patients with OA, RA, or fibromyalgia that failed to find a significant benefit from the arthritis self-management program (J. Rheumatol. 2002;29:362-8). He also coauthored a meta-analysis of 17 other controlled trials of the same program, and found that self-management classes led to small reductions in pain and disability (Arthritis Rheum. 2003;48: 2207-13).
"A self-management course is just one of several tools to promote patient coping," said Dr. Nortin M. Hadler, a rheumatologist and professor of medicine at the University of North Carolina at Chapel Hill. "I believe that almost all rheumatologists are aware that an important part of treating regional joint pain is to have patients exercise and meet with peer groups, but the patient doesn’t need a structured Arthritis Foundation program. They can go the aerobics classes, the YMCA, or a health club."
"As a group, rheumatologists don’t refer their patients to self-management," said rheumatologist Dr. Halsted R. Holman, the Guggenheim Professor of Medicine Emeritus at Stanford and a codeveloper with Dr. Lorig of the Stanford self-management program. In many cases when a rheumatologist or other physician makes the referral, the patient has a hard time finding a nearby program or a program at a convenient time. "It’s mainly access issues," he said.
Another rheumatologist who collaborated on developing the Stanford program agreed. "There are about 7,000 classes given a year in the United States, but the country is big and just because there is a class in a patient’s area doesn’t mean it will be convenient," said Dr. James F. Fries, also a rheumatologist and professor emeritus at Stanford. In addition, "the referral mode has always been lousy." The growing availability of self-management training via the Internet may address the convenience issues and broaden patient uptake, he said in an interview.
Hurdles to Referral
"I’ve never felt any hostility from rheumatologists, and the American College of Rheumatology has never been less than 100% supportive," Dr. Lorig said. "We don’t get a lot of referrals from rheumatologists in most places, but I don’t think it’s the rheumatologists’ fault. We make it exceedingly difficult to refer."
In general, physicians don’t know about self-management programs in their communities – where they’re offered and when – because "the programs have never been closely linked to the medical system. "We have 1,000 license holders [groups that have purchased a license from Stanford to hold arthritis or chronic disease self-management classes] and more than 3,000 trainers," but despite that, doctors don’t know where and when programs are offered. "We all recognize this is a huge problem. We’re now big enough that a national, central referral source is possible, and we will hopefully have one within the next year," she said.
"We also know from our research that people with arthritis who receive a referral or recommendation from their doctor are 18 times more likely to attend a self-management education program," said Teresa J. Brady, Ph.D., a senior behavioral scientist in the CDC’s arthritis program, adding that the No. 1 reason why patients don’t attend a program is that they do not know it exists, and they believe that if it did exist, they would have heard about it from their physician. "As a consequence, we at the CDC’s arthritis program have begun pilot testing a marketing strategy to help health care providers know when and where in their community patients can take training programs."