This is Part Two of a two-part series on early arthritis clinics. (See Part 1 on page 1 of the May 2008 issue.)
Over the last 20 years, early, aggressive treatment has become the standard of care for patients with rheumatoid arthritis (RA). Yet, there are relatively few specialized early arthritis clinics (EACs) available to the 1.3 million RA patients in the United States, in spite of the tremendous success of EACs in Europe. Why is this?
According to physicians interviewed by The Rheumatologist, there are many reasons for the paucity of this type of clinic:
- America’s healthcare system differs from that of Europe—it’s not designed for early, easy patient access;
- The referral base is not adequately educated about the nature of early inflammatory synovitis and the importance of early diagnosis and treatment;
- Medical schools aren’t teaching new doctors enough about RA;
- The effort needed to start an EAC does not appear to justify the time and expense; and
- Many rheumatologists believe they can handle early RA patients within their existing schedules.
However, in spite of good intentions, most RA during the early stages of disease isn’t being seen in a timely manner.
Challenges for EACs in the U.S.
Ninety percent of patients with musculoskeletal and autoimmune disorders are receiving rheumatology care from their primary care physician (PCP), according to data gathered by Stephen A. Paget, MD, chair of the division of rheumatology at the Hospital for Special Surgery in New York City. In fact, less than 50% of RA patients are referred to specialists within the first six months of symptom onset.1 The actual percentage may be considerably lower, according to research by rheumatologist John J. Cush, MD, chief of rheumatology and clinical immunology at Presbyterian Hospital of Dallas. He that says fewer than 5% of RA patients are seen by rheumatologists in the first six months, and the average new RA patient comes in with disease duration of two to three years.
Is the solution to increasing access to establish an EAC? Not necessarily. It takes money to establish infrastructure, hire and train staff, and advertise to physicians and the public. Just because the EAC concept worked in Europe doesn’t mean it will in the U.S. For example, while Europe has an easier-to-negotiate single-payer insurance system, the U.S. has hundreds of payers, complicating the financial aspects. Also, European medical communities are relatively small, making it easier to educate and get referrals from local physicians. If an EAC is established in an American community, will the medical office get appropriate referrals?
“My calculation is that there are probably 75,000 new cases of RA every year in the U.S.,” Dr. Cush says. “If every rheumatologist made an exceptional effort to get those patients, it would mean an extra 20 to 30 patients a year, and they could absorb that with no problem. However, to capture these patients, the rheumatologist will have to see many more patients, as the yield for early inflammatory arthritis is usually less than 10%, even when promoting referral rules to primary-care physicians. You might have to see hundreds of patients with fibromyalgia to get one with early RA. So, why should somebody in practice revamp for what seems to be very little gain?”
Another challenge for rheumatologists is being referred a patient with symptom duration of one to two years. “In the last several years, I don’t remember seeing a patient with true early synovitis,” says Gary Firestein, MD, chief of rheumatology and immunology at the University of California, San Diego School of Medicine.
In the typical RA case, he says, a patient will stay at home and self-medicate for a few months. When there’s finally a doctor visit, the signs and symptoms of inflammatory synovitis may not be recognized; treatment will usually be conservative, perhaps with a non-steroidal anti-inflammatory drug. Another month or so may pass. When the patient returns to the doctor with continuing pain, tests are run and another couple of weeks go by before there’s a referral to the rheumatologist—who may have a wait of two or three months for an appointment.
How Early Is Early?
Although today’s ideal is early treatment, the actual definition of “early” varies. While some advocate treatment as early as three months, others prefer to wait.
“I think we need to be careful and not overtreat a patient with symptoms of joint pain,” says Larry Moreland, MD, professor of medicine at the University of Pittsburgh and formerly at the University of Alabama, Birmingham, who has participated in an EAC. “Often times patients have self-limiting problems and do not require treatment in the first few weeks,” he says, “and in about a third of the cases, the symptoms will resolve without therapy.” He adds that, “what we don’t want is to have a patient with RA go untreated for six to 12 months.”
However, “most PCPs have a hard time making the diagnosis of RA, even if it’s clear RA,” notes Dr. Moreland. “That’s because it often isn’t clear. Patients have vague symptoms. Making an RA diagnosis for me as a rheumatologist is pretty easy. But if you’re out there on the front line where you’re seeing all kinds of problems, it’s not easy.”
Dr. Firestein agrees. “The primary care doctors have to be trained to know exactly what to look for,” he says. According to Dr. Paget, “because medical school and house staff training in the recognition, diagnosis, and treatment of such disorders is so poor, is it a surprise that well-intentioned physicians on the front line either miss or mistreat these diagnoses or patients altogether because they don’t even know what they don’t know?”
“It’s, in many ways, a grassroots effort with medical schools,” Dr. Paget says, urging rheumatologists to get involved. “The schools have ‘x’ amount of time and resources to do a huge amount of education. They basically cram it in. As a result, a specialty like rheumatology suffers.”
Dr. Cush, who runs an EAC and frequently lectures, says that, while education is certainly needed, most PCPs want to know who and when to refer. Therefore, with his PCPs, he promotes the “Referral Rules” advocated by Paul Emery, MD, professor of rheumatology at the University of Leeds, U.K., that require six weeks of joint symptoms and one of the following symptoms: three or more swollen joints a positive metacarpophalangeal (MCP) or metatarsophalangeal (MTP) squeeze test, morning stiffness for more than 45 minutes, or abnormal labs (erythrocyte sedimentation rate [ESR], C-reactive protein [CRP], rheumatoid factor [RF], or classical complement pathway [CCP]).
Dr. Cush believes that “the guy in the trenches, the primary care internist or physician, has no intention of going to a lecture designed to educate them on early RA. They’ve got too many things to deal with already. Thus, we have to create rules that can facilitate patient referral.” To get the word out about the rules, Dr. Cush suggests a $5–10-million national advertising campaign aimed at both PCPs and the general public. He suggests it might be funded by stakeholders (e.g., pharmaceutical companies, foundations, societies, etc.).
“My idea is to make Tuesday ‘Early Arthritis Day,’ ” he says. “Your rheumatologist will see patients every Tuesday and all the PCP needs to do is fill out a prescription pad for the walk-in visit.”
A new initiative is starting at Dr. Cush’s EAC. He is working with the hospital’s public relations department to reach all local primary care doctors in the community, providing referral rules and indicating that nine doctors in the EAC will see patients within two weeks of referral. In Birmingham, Dr. Moreland’s EAC was established by sending out letters to all PCPs in Alabama, saying that his group will try to see all patients in a timely manner. In smaller communities, such as Santa Barbara, Calif., it’s easier for a dedicated rheumatologist to spread the message to area primary care physicians. Timothy Spiegel, MD, MPH, a rheumatologist in Santa Barbara, Calif., who has been in private practice for the past 20 years, knows all the local PCPs and says he has trained many of them to recognize early RA. He makes sure to see referred patients within a week.
Dr. Paget’s EAC at the Hospital for Special Surgery is considered by many to be a model EAC. He says he got referrals with the help of a $1-million private donation. “Each medical group or center will have its own way to set up an EAC,” he says. “What we focused on was clinical and basic research, and on getting the word out.” His team developed a Web site, designed programs for patients, met with managed care and third-party payers to develop practice algorithms, and met with community organizations to recruit and educate patients. The hospital public relations staff arranged local news stories, and an advertising agency was hired to prepare educational ads for the public.
However, Dr. Paget says physicians don’t need a large financial windfall to start an EAC. “It’s very simple to do some of the things I’ve mentioned. My personal feeling is that what’s necessary is a partnership with pharmaceutical companies (particularly ones making drugs for arthritis), with academic medical centers, the American College of Rheumatology, and the Arthritis Foundation. They are already getting the word out, but more needs to be done.”
EAC with a U.S. Twist
Noting that a European-style EAC is not ideal in the U.S., Dr. Cush says “the vast majority of rheumatologists need alternative ways to take early RA patients in their practices.” He suggests using one or more of the following models:
- A once-a-week clinic;
- A physician extender (nurse practitioner, physician assistant) for intake/screening;
- Chart reviews to prescreen and avoid wasted time;
- Physician-to-physician phone calls for consultation;
- Flexible scheduling (hold spots, then fill with regular patients if early RA patients don’t come); and
- “Meet and Greet Rapid Slots” scheduled on top of regular office visits, where a patient fills out a questionnaire, the rheumatologist does a joint exam and makes a spot decision, then asks the patient to come back for tests and/or an appointment.
“The reason to have an EAC,” says Dr. Moreland, “is for a system in place for academic centers to do research and develop databases. In private practice, an EAC may help rheumatologists see patients sooner, rather than later.”
Sue Pondrom is a medical journalist based in San Diego.
