Spring 2015

Can’t ‘Open Wide’

The challenges of treating patients with scleroderma

By Julie Flaherty

Scleroderma is an autoimmune disease that causes thickening and tightening of the skin. Patients with systemic scleroderma may have stiff hands and difficulty opening their mouths, making it hard to brush and floss. To make matters worse, many scleroderma patients report that they have difficulty finding a dentist who will treat them, and most are not satisfied with the care they receive. But, according to a Tufts survey published in the Journal of Clinical Rheumatology, a little education could make things easier for patients and dentists.

David Leader, D85, MPH13, an associate clinical professor of diagnosis and health promotion, surveyed 269 Massachusetts dentists to find out how they perceive scleroderma patients. More than 91 percent said that dentists have a responsibility to treat these patients, but only 71 percent said they felt prepared to do so. A big predictor of a dentist’s confidence in treating scleroderma patients is knowing something about the disease, which affects some 80,000 Americans, according to the Scleroderma Foundation.

Referring a scleroderma patient to a specialist isn’t the answer, Leader says. “You are the specialist; you are the one who knows about oral health,” he says. “What you need to know about scleroderma, that’s a 20-minute conversation.”

Ninety-six percent of dentists would be open to learning more about scleroderma.

For example, scleroderma patients may be able to open their mouths only 15 millimeters—about the size of a jelly bean. Because they likely take several medications, the dentist will need to understand any side effects or interactions.

About 70 percent of scleroderma patients have dry mouth, “so you have to be up on the treatments for xerostoma,” Leader says. In these patients, it’s very common for the ligaments that hold the teeth in their sockets to widen; unlike with periodontal disease, however, this usually doesn’t lead to tooth loss. Scleroderma patients are also more likely to suffer multiple tooth reabsorption, where the pulp starts eating the tooth from the inside out. It’s a rare occurrence, but it is much less rare in scleroderma patients.

Leader’s survey found that 96 percent of dentists would be open to learning more about scleroderma. Dental schools could play a role in that, he says, by offering more continuing education courses that discuss the treatment of rheumatic diseases. “It’s possible you could go your entire dental career without seeing someone who has scleroderma,” Leader says. “But you might have a patient with another autoimmune disease—lupus, rheumatoid arthritis—and the concerns are all very similar.”

Patients should not be afraid to do some educating, too. “I really like the idea of the patients being their own advocates,” Leader says. “In many cases, they know more about their diseases than their primary-care physicians. Bring the information with you to the dentist. Explain that this is as far as your mouth will open. The dentist does want to know.”

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