Purpose of urate-lowering therapy ‘needs to be reinforced every time patients come in’

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DESTIN, Fla. — Patients with gout should be continually reminded that urate-lowering therapy may go on for the rest of their life, according to a speaker at the Congress of Clinical Rheumatology East annual meeting.

“This needs to be reinforced, and it needs to be reinforced every time patients come in,” N. Lawrence Edwards, MD, MACP, MACR, a professor of medicine at the University of Florida College of Medicine, in Gainesville, told attendees. “They just don’t understand why they’re on [urate lowering therapy (ULT)] or how long they’re supposed to be taking it, so a lot of that is on us.”


“They just don’t understand why they’re on [urate lowering therapy] or how long they’re supposed to be taking it, so a lot of that is on us,” N. Lawrence Edwards, MD, MACP, MACR, told attendees. Image: Justin Cooper | Healio

Edwards, who is also chairman and CEO of the Gout Education Society, stressed patient education as a critical component of treatment. He discussed a case of a man aged 67 years whose gout began 20 years earlier. He had initially been treated with allopurinol, but discontinued due to worsening flares, and now presented with persistently swollen hands, knees and ankles, as well as tophaceous deposits across multiple joints.

“This man really is a classic example of our educational failure in most patients with gout,” Edwards said. “This patient wasn’t warned that there might be increased flares, and that he needs to plow on through that. He probably wasn’t given a description of the disease, that this is an inflammatory disease that’s going to continue to get worse over time.”

Edwards additionally pointed to data from a large practice in Seoul showing that a lack of understanding played a significant role in ULT discontinuation. In the study, patients were shown an educational film on ULT adhering to American College of Rheumatology guidelines, then given allopurinol or febuxostat and monitored for 8 years. Among patients who discontinued, poor health literacy was the reason for 93% of those given febuxostat and 40.4% of those given allopurinol.


N. Lawrence Edwards

“They didn’t recognize that it was not just for pain,” Edwards said. “When they weren’t having any pain, they would stop it. They didn’t realize this was going to be a therapy for life, even though this was all in the treatment video they were made to watch.”

To keep patients from dropping these drugs, they should be reminded of their purpose repeatedly, Edwards said.

“I’ve got a PA that’s an expert in this and gives them the spiel at least three to four times a year,” he said. “Our retention rate comes close to 100%.”

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