A new survey pools physician and patient knowledge about hiv drug resistance
by Chael Needle
LifeGuide
[Treatment Horizons]
Across the board, patients living with HIV/AIDS face the challenge of drug resistance—the result of a change or mutation in the genetic structure of HIV—affecting their current regimen and future treatment options. A new first-of-its-kind survey, however, suggests that physicians and patients are concerned to different degrees about resistance. The survey also revealed a gap in what patients thought they knew about resistance and what they actually understood about it, among other findings.
Commissioned by the American Academy of HIV Medicine (AAHIVM), whose members provide direct care to more than two-thirds of the patients in active treatment for HIV disease, and sponsored by Boehringer Ingelheim, the Perspectives in HIV Drug Resistance survey polled 400 individuals being treated for HIV/AIDS, ages eighteen and older, and 385 self-described HIV-treating physicians across the United States.
Dr. Jeff Schouten, an AAHIVM member, says that the survey results resonated with his own experiences as an HIV care physician for nine years. For instance, he mentions the physician-patient divide in terms of the concern about resistance; ninety-one percent of surveyed physicians are “extremely” or “very” concerned about HIV drug resistance while only fifty-four percent of surveyed people living with HIV rate their concern similarly.
Another issue that resonates is the ranking of important issues from a patient perspective, with side effects and adherence at the top and resistance lower down. “But I think resistance underlies a lot of the concerns over adherence and toxicity—what drives all of our concerns over managing those issues is ultimately whether or not drug resistance develops and a regimen loses its efficacy over time.” For this reason, he suggests that resistance discussions be grounded in the context of adherence and ongoing viral replication: If the virus is suppressed through adherence, the opportunity for the virus to develop the mutations that confer resistance is pretty much quashed. Adherence counseling, he suggests, is a prime time for physicians to discuss resistance.
Before physicians connect the dots between resistance and adherence or toxicity, they need to talk to their patients about resistance and talk in ways that leave a lasting impression. He adds, “Half of patients don’t know whether they’ve developed resistance or not. Fifty-nine percent of patients said that they were unsure—or they had never been told—if their virus had developed resistance,” even though ninety-nine percent of physicians reported testing for resistance.
Dr. Schouten feels encouraged by the findings that showed most patients who did have resistance discussions with their physicians said they were able to understand the process and the terminology it was presented in. Seventy-seven percent of patients, however, did think that some of the terms physicians use to explain resistance are difficult to understand. But this gap might be remedied by scaling back the level of detail, he offers. Explaining the technical ins and outs of drug class-specific resistance or genotyping and phenotyping, two tests used to measure resistance, is “pretty much irrelevant to patients when you’re explaining the basic concept of what’s happening to their virus and their bodies when they’re not taking their drugs every day.”
Physicians, he says, could do an even better job by having resistance information material to give to patients. While the survey shows that sixty-five percent of patients say their physicians are their primary source of resistance information, half of physicians do not display pertinent educational materials. Dr. Schouten says the Academy will help physicians meet this expectation by developing and providing new materials.
When he has conversations about resistance, Dr. Schouten has also found that patients often inquire about how long a regimen will work. Many patients believe that “all of these regimens have a finite period of efficacy,” a misperception that has been repeated in public dialogues about the need for second and third-line treatment regimens. “If you are fully adherent to your regimen, there is not a finite duration of efficacy. So I often engage in discussions about adherence and resistance in response to that question about how long will this regimen work. And I particularly have that discussion with people initiating therapy for the first time,” he says.
The survey seems to suggest that patient literacy overall is not on the decline. “My gut feeling had been that people who were infected much longer rather than shorter would have been much more knowledgeable about the issue. But actually the survey found that people who were more recently infected had the same concerns about resistance as people who were infected for a long time. The other encouraging surprise is that two out of five patients surveyed report being active in HIV-related activities in their community, such as advocating for people with HIV, counseling others, and focusing their attention on treatment or prevention education. So I think you are still seeing a fairly engaged patient population.” One that can help present resistance information to others in a comprehensible way, he hopes.
Chael Needle wrote about the International Partnership for Microbicides in the August issue.
September 2006
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