As far as we are aware, this study is the first to examine decision-making preferences in HIV-infected adults. We found that patients who preferred to share decisions with their HIV provider had better outcomes than those who wanted their HIV provider to make decisions and those who wanted to make decisions alone. This is seemingly in contrast to research in other settings, which suggests that more patient involvement in health care decisions leads to better outcomes. In our study, the benefit of the patients being involved in health decisions was reduced when the patient preferred to make decisions alone.
One possible reason for why our findings seem to differ from those of previous studies is that we examined multiple outcomes, allowing us to distinguish the effect of decision-making preference on appropriate receipt of HAART from adherence to HAART. Our finding related to adherence is similar to findings in other studies: patients who want to share decisions with providers and those who want to make decisions alone are similarly likely to adhere, whereas those who want their provider to decide are less likely to adhere. In this regard, a higher degree of patient preference for involvement was associated with a better outcome, and it makes intuitive sense that patients who rely on their provider may have more difficulty with commitment to treatment plans when the provider is not present. Our finding related to receipt of HAART, however, adds a new dimension to previous studies. This new finding may also be intuitive: patients who preferred to make decisions alone were less likely to be on HAART when it was clinically indicated. Although we do not know exactly why these patients are less likely to take HAART, 1 possible explanation is that these patients are so independent that they may sometimes reject the advice or expertise of the HIV provider. Conversely, our finding that these patients are as adherent to HAART as decision sharers suggests that they are well able to take control of their medication regimen once they have committed to it.
We also found that most patients (63%) preferred to share decisions with their HIV provider. This is at the high end of the range (20–63%) found by a recent review of reported preferences for a shared decision-making role11
, and indicates that patients with HIV tend to prefer levels of involvement that may be higher than those found among other groups. Perhaps this enhanced desire for involvement in decisions is related to the fact that patients with HIV have historically been activist, or because decisions for HIV treatments are complex, with substantial benefits, but also side effects and risks. Similar to studies on other groups of patients11
, we found an association between decision-making preference and age, such that younger patients were more likely to prefer a more involved role than older patients. In contrast to other studies that have consistently found that women prefer a more involved role11
, we did not find any association between gender and decision-making preference.
Finally, we found that patients who preferred to share decisions with their HIV provider reported better communication with their HIV providers. This suggests that providers may be able to influence the decision-making preferences of their patients through good communication. For example, patients who wanted to share decisions were more likely than patients in either of the other 2 groups to report that they understand their provider’s explanations and that they had been involved in decisions in the past. Therefore, providers who want to motivate patients toward a shared decision-making role must be able to explain complicated material well to patients, and engage them in their own health care. In addition, we found that patients who wanted to share decisions were also more likely to feel they were known “as a person” by their HIV provider than patients who wanted to make all decisions alone. This further suggests that 1 way for providers to assist highly independent patients in gaining trust and accepting advice might be to build a more personal relationship with them.
Several limitations are also worth noting. First, as with any observational study, there is the potential for unmeasured confusion, and causality cannot be determined. For example, a study of patients with cancer found that patients preferred more provider involvement in decisions as their cancer advanced and they became more ill22
. If the same was true among patients with HIV, we might be suspicious of a cross-sectional association between a preference for a more provider involvement and greater illness as it could be inferred that a preference for more provider involvement caused the patient to become sicker. However, such an association was not found in our study, as it was patients who wanted the least provider involvement who were the least likely to have suppressed HIV RNA. Instead, we found an association between patient preference for more provider involvement and not taking antiretroviral medications, something that is not likely to be confounded by disease status. One other possible source of confounding is that patient preference for involvement in decision-making may be related to some global personality trait that is also associated with patient self-care, or the degree to which patients and providers are similar (i.e., concordant) with respect to race, ethnicity, gender, or sexual orientation. Finally, there is uncertain generalizability of our results from a single clinic to other settings.
These results suggest that practicing clinicians ought to encourage patients toward a shared decision-making role. This means not just activating patients who are disengaged, but also building trust and rapport with patients who are highly independent. Perhaps an explicit discussion between patients and their providers regarding decision-making roles would be helpful. However, it may not be easy to modify decision-making preferences, and it is unknown whether modifying these preferences can lead to improvements in patient outcomes. Future work is needed to determine the most effective way of modifying patients’ preference for involvement in decisions, and exploring which characteristics and behaviors of clinicians are most supportive of patients developing a shared decision-making preference.