Adherence and Health Care Utilization in HIV/AIDS—Rational or Rationalizing?

891 tock in rationality seems banefully low these days, hovering somewhere around the level of the Euro. Surveys seem to indicate that many Americans have no more regard for rational thinking than they do for feng shui, relegating logic to “one way to think about things” when making decisions. Numerous studies show that people repeatedly violate the basic principles of rationality. 1 Some might find this situation emblematic of the gulf between current therapy for HIV and the behavior of people at risk for and living with HIV. Herculean efforts, including rational drug development, have yielded agents that can arrest viral replication and prolong survival in a disease that was uniformly fatal. However, many patients do not benefit fully from the availability of such therapy. Studies suggest that adherence rates as high as 95% may be necessary to avoid drug resistance. 2 In the real world, less than 40% of patients starting protease inhibitors are able to maintain full viral suppression for a prolonged period. 3 In addition, while the incidence of potentially fatal opportunistic complications of HIV can be lowered dramatically by prophylactic medication such as trimethoprim-sulfamethoxazole, nearly a third of patients with advanced disease do not take this medication, and others with known HIV infection nonetheless first present to medical care in the throes of a potentially preventable infection. 4 What are patients thinking? Is thinking even the right word to describe medication-taking behavior, risk behaviors, and health care utilization? This issue of the Journal features three articles that help us to understand the behavior of people with HIV/AIDS. Taken together, they shed light on behavior and its determinants. Laws and colleagues used in-depth interviews and qualitative methods to study adherence to antiretroviral medications. 5 Despite initial assertions of good adherence, when probed, many patients reported behavior to the contrary. Significantly, they did not recognize these omissions as nonadherence; many also failed to appreciate the likely adverse consequences. Perhaps the most improtant insight was that many patients tend to rationalize “adherence” as synonymous with whatever level of adherence they can achieve. Another notable finding was that several patients considered the taking of so-called “drug holidays” to be normal and even health-promoting. A third finding was that even in the absence of a language barrier (many patients in the study were Spanish speaking), communication between physician and patient was often insufficient. Like much qualitative research, some of the study’s results just sound right, supported by verbatim quotes that echo what our own patients try to tell us. Once one hears patients thinking out loud, it is more understandable that they behave as they do. One patient was told that if she took her medication without food, it would make her sick. So when she skipped a meal, she also skipped her medication. The study benefitted from the use of one-to-one interviews, which seem to have allowed patients to admit behavior that might disappoint their physicians. It is evident that physicians and other members of the care team have more explaining and much more targeted questioning to do. The study has some limitations. The sample of 25 interviewees was restricted to Massachusetts and included a large proportion of native Spanish speakers. It is likely that interviews conducted with patients in different regions of the country would yield additional insights. In addition, we did not get the physicians’ side of the story. However, even in the absence of this, what is most important is what patients understand and retain. Rigsby et al. 6 conducted a small, unmasked clinical trial to improve adherence to antiretroviral therapy. The interventions were based on using individualized cues (e.g., tooth brushing) to help patients remember when to take medication, accompanied by feedback about medication taking using electronic (MEMS) pill bottle caps, with or without a cash incentive. The only significant improvement occurred in the cash reinforced group, and this effect disappeared soon after the intervention was stopped. Patients with high baseline adherence were generally able to maintain their performance, whereas alcohol dependency was associated with poorer adherence. The investigators are in the vanguard of adherence research in HIV, as published studies of adherence interventions are in very short supply. Hovever, several factors may have attenuated this study’s ability to draw firm conclusions. Very high baseline levels of reported adherence may have created ceiling effects and also limited generalizability. The study could not determine if patients took their medication in addition to periodically opening the MEMS device. Finally, selection for monitoring of the drug for which baseline adherence was lowest allows the possibility of regression to the mean. We are left with an urgent need for randomized designs to evaluate adherence interventions, and additional confirmation of the value of money to enhance adherence. 7,8 Current provider Adherence and Health Care Utilization in HIV/AIDS— Rational or Rationalizing?