Ankylosing spondylitis patients miss effective Tx due to lack of referrals; primary care docs 'a major barrier'

Primary care physicians have proved to be one of the biggest obstacles to getting the new highly effective therapies for ankylosing spondylitis to affected patients, Dr. Christopher T. Ritchlin said at a symposium sponsored by the American College of Rheumatology. Tumor necrosis factor (TNF) inhibitors constitute a major therapeutic advance in ankylosing spondylitis. But rheumatologists have had a tough time getting out word of this new therapeutic option to the huge number of disaffected patients who were lost to follow up during the era of less-satisfactory treatment.

"We've had all these patients who've come to us, usually young very active males or females who had early ankylosing spondylitis (AS) and may have had minor radiographic changes, [to whom] we gave NSAIDs and exercises to do. We'd say, 'OK, come back in 6 months.' And we've just never seen them again," explained Dr. Ritchlin, director of the clinical immunology research center at the University of Rochester (N.Y.). With varying degrees of success, these patients have adapted to the limitations imposed by their disease. Upon learning about the new treatment options, some patients simply aren't interested; many others with more severe disease who have come in to the office have been helped enormously by anti-TNF therapy, he said.

Meanwhile, large numbers of patients with early AS continue to be misdiagnosed or diagnosed late and undertreated by primary care physicians, according to the rheumatologist. Dr. Ritchlin has mounted an aggressive local effort aimed at educating patients and clinicians about the new therapy for AS. The Arthritis Foundation has been a big help in making contact with new and former patients. Efforts to reach out to primary care physicians and get them to consider AS in the differential diagnosis of chronic back pain in young patients have been less successful.

"The primary care physicians have been a major barrier for us. They really haven't looked for or found ankylosing spondylitis. The referrals we get are mostly from a big orthopedics group that does a lot of joint injections. We need to become more active in helping primary care physicians diagnose the disorder], especially in women, where it's a much harder diagnosis to make," Dr. Ritchlin continued.

In women with AS, axial spinal involvement is often milder than in men. Affected women have more cervical spine and peripheral disease. Their higher self-rated pain scores and impairment of daily activities indicate a generally less favorable long-term course. Until anti-TNF therapy came along, standard treatment involved a gradual escalation from NSAIDs and physical therapy to off-label use of methotrexate and other disease-modifying antirheumatic drugs. But at best the older DMARDs controlled signs and symptoms without altering progression of ankylosis, a key factor in the disease's substantial disability.
TNF inhibitors offer much faster onset of action and substantially greater improvements in symptoms, quality of life, and function.

Clinical measures such as chest expansion and occiput-to-wall distance have shown significant gains. Toxicity is substantially less than with older DMARDs, too, at least out to about 1 year (the length of studies to date). Whether TNF inhibitors are truly disease modifying hasn't been settled, although MRI studies are encouraging, Dr. Ritchlin said. Etanercept is the only TNF inhibitor with FDA approval for AS. Infliximab is approved in Europe, and a phase III U.S. randomized trial is close to completion.

Reference:
Jancin, B. "Ankylosing spondylitis patients miss effective Tx due to lack of referrals; primary care docs 'a major barrier'." Family Practice News 34.8 (April 15, 2004): 44(1).