Direct-to-Consumer Testing’s Expansion to Rheumatology Has Benefits but Potential Risks
“For a lot of people, losing control over their health is maybe the most frightening experience they can have, so I think a lot of patients use this as a way to kind of have ownership over their health,” Dr. Kim said. “Let’s say they’ve been to four doctors. No one can explain what’s going on. They’re getting frustrated, and so they just turn to solutions where they feel like they have ownership over the situation.”
Though the market is undoubtedly growing, the growth appears uneven across geography and institution types. Kim has seen a “fair number of referrals,” with patients coming in with results from a DTC test. Michael Putman, MD, MSci, assistant professor of medicine at the Medical College of Wisconsin in Milwaukee, hasn’t seen it much. “I know that patients can get testing done themselves independently, but I don’t have people routinely coming in with tests they’ve ordered in advance of our appointment,” Dr. Putman said, but, like Dr. Kim, he recognizes why patients might seek them out.
“I’m a big fan of patient empowerment, and I do think that medicine serves a gatekeeper role that sometimes can be a little too far,” Dr. Putman said. “I think there is value to patients being able to get more information and try to understand what is happening in their bodies. I have a lot of compassion for someone who would try to find testing outside of the normal channels.”
Indeed, bringing these test results to a visit could be informative in some scenarios. A negative ANA test, for example, pretty much excludes lupus 100%, Dr. Kim said. But a positive ANA doesn’t tell him much, and if his clinical suspicion for a condition is high, he likely would order that test anyway, even if the patient came in with their own results. Dr. Putman also pointed out that the vast majority of tests used in rheumatology have a high rate of false positives.
“I think that will be the major area where this causes quite a lot of grief to patients and some frustration to some providers,” he said. A rheumatoid factor test like the one Ms. Welsh ordered, for example, might test positive in 10 out of 100 people randomly gathered in a room, but the majority of those individuals would not have RA, he said.
That test is another popular rheumatology one, according to Timothy Niewold, MD, vice chair for research in the Hospital for Special Surgery Department of Medicine in New York City. Among the possible reasons people might order these tests are the delay in diagnosis that can often occur with a lot of rheumatologic conditions and that “it can take a while to see a rheumatologist, depending on what part of the country you’re in and what the availability is,” he said. He’s not surprised to see tests for Sjögren disease among the offerings, for example, because it’s a condition that’s difficult to diagnose but reasonably common within autoimmune diseases.
