To our knowledge, our study is the first to explore the association between observed patient-provider communication behaviors and decision-making preference in patients with HIV. We found that the majority of patients preferred a shared decision-making role and that patient age, depression, care satisfaction, and ratings of provider communication were associated with patient decision-making role preference. However, we also found little difference in observed measures of patient and provider communication behaviors among patients with different decision-making role preferences. This is similar to recent findings from a study of older patients and their orthopedic surgeons31
and suggests that patients’ decision-making role preference may not manifest in their communication behaviors during the clinic visit. Alternatively, it is possible that despite wanting a more active role in the decision-making process, many patients don’t have the tools to convey this preference in communication with their provider.
Although measures of observed provider behavior did not differ according to decision-making role preference, we found that patients who rated the quality of their providers’ communication highly preferred to share decision-making rather than wanting their providers to make decisions. There are several possible explanations for this finding. First, differences in provider communication about decision-making may not have been reflected in the particular communication behaviors analyzed with the RIAS. Although we chose behaviors that have been traditionally thought to encourage patient participation in care, we may be overlooking other measures that are specific to the decision-making process. Second, certain provider communication behaviors may be predictive of decision-making role preference only in the context of multiple clinic visits over time rather than a single visit as was used in our study. Third, there could be an association between non-verbal communication and patient rating of provider’s communication about decision-making that we were unable to capture through the audiotaped encounters. Future research may be able to provide insight into the effects of multiple clinic visits and non-verbal communication measures on patient preferences through the use of longitudinal studies and videotaped clinical encounters.
Our study also found that preference for shared decision-making did not significantly differ between whites and African Americans in contrast with two studies in which African Americans were more likely to prefer their provider make decisions compared to whites32,33
. It is worth noting that fewer than half of the participants preferred an active role in the decision-making process in those studies. In contrast, the majority of patients (72%) in our study preferred a shared decision-making role, mirroring findings from other studies assessing decision-making preferences in patients with HIV34,35
. Our study results suggest that differences in patient engagement level between African American and white patients36
might not reflect a decreased preference for involvement in the decision-making process. Rather, other provider and patient factors such as health literacy, self-efficacy, and provider biases may explain these disparities within patient participation and merit further exploration.
We also found that patients with depressive symptoms were more likely to prefer delegating decisions to providers. Although a prior study found that patients with depression were more likely to prefer an active role than patients with other conditions, the effect of depression in the setting of chronic disease was not evaluated9
. Another study found that while patients with all severity grades of depression were highly interested in receiving information, they were not as highly interested in participating in treatment decision-making37
, and qualitative work indicates that patients with depression may be less likely to engage in care because of feelings of low self-worth and assertiveness38
. Additional research could determine whether efforts to address these underlying issues enable providers to encourage patient participation in the decision-making process.
In contrast with several other studies8–11
, we did not find associations among patient characteristics of younger age, female gender, or higher level of education and an increased preference for a more active role in the decision-making process. We found instead that older compared to younger patients were more likely to prefer sharing decisions. Perhaps the effects of age on decision-making preferences are different in HIV care, where the median age is much younger than in diseases such as cancer, which has been the focus of prior studies on decision-making preference. Interestingly, a study of asthmatics13
in which the mean age of participants was 41 years also found no association between older age and preference for a passive role in decision-making after adjusting for educational status. In contrast with other studies, our study population had a relatively high number of high school-educated individuals (72%), which may help explain why we did not observe an association between lower levels of education and preference for the provider to make decisions.
One important consideration when interpreting the results of our study is that decision-making role preference was assessed at a single time point, after
the audio recorded patient-provider encounter. While patients were asked about general decision-making preferences rather than specific treatment decisions that may have been discussed during that visit, it is possible that a patient’s perception of the visit could have affected his/her reported decision-making role preference. To the extent that patients were reacting to that day’s visit, it would be difficult to infer that their decision-making preference (as assessed after the visit) was able to influence their behavior in the visit, but relatively easier to imagine that the provider’s behavior in that visit was able to influence the patients decision-making preference. On the other hand, most of our patients had a long-term relationship with their HIV care provider, and we believe that patients’ decision-making preferences have been shaped by their own characteristics as well as the cumulative effect of multiple visits with that provider. Therefore, for practical purposes, we consider this study to be cross-sectional, capturing a single point in time in the patient-provider relationship. In terms of precedent, the study by Hudak et al.31
also assessed patient preferences after the clinic visit allowing them to evaluate the impact of provider communication behavior on decision-making role preference.
This study has other potential limitations. First, the patient questionnaires were administered by research assistants resulting in the potential for social desirability bias. Next, participants were English-speaking, and the majority of providers were white. Therefore, generalizability of our results to other patient and provider populations is limited, and we could not evaluate the association between patient-provider racial/ethnic concordance and patient decision-making role preference. Lastly, we were unable to assess the reliability of the single-item measure we used to assess general decision-making role preferences, and generalizability of our results to specific decision-making contexts, such as initiation of antiretroviral treatment, may be limited.
Our results indicate that patients with HIV may be particularly interested in taking a collaborative approach to decision-making, but that depressive symptoms may affect patients’ level of engagement. Providers should be wary of assuming their African-American patients and older patients are more likely to prefer a passive role and should foster communication about decision-making preferences with these patients as with others. While the current research provides insight into some of the factors associated with patient preferences, fully understanding decision-making preference remains a challenging task. Directions for future research include assessment of preferences over time, identification of provider behaviors that affect patient preferences, and development of tools to improve communication behaviors among patients who desire a more active role in the decision-making process. Based on our findings, providers should not assume patient preferences from simply observing patient communication behaviors, but rather should consider engaging their patients in explicit discussions about decision-making preferences.