Objectives: This study reports on the sources of antiretroviral treatment information that are important to people living with HIV (PLWH) in treatment decision-making and their preferred role in treatment decision-making.
Design: Cross-sectional qualitative and quantitative study.
Method: PLWH in Florida (n = 79) with a CD4-nadir below 350 cells/microl were interviewed about the sources of information they used in decision-making about antiretrovirals and their knowledge of resistance. Their desired involvement in the treatment decision was assessed using the Control Preferences Scale.
Results: The ten most frequently cited sources of information included the primary HIV-physician, magazines written for PLWH, drug advertisements, Internet, HIV-positive friends, seminars/conferences/symposia, expert literature, other physicians, peer educators, and naturopaths/nutritionists. The HIV-physician was the most important source of information, followed by publications. PLWH declining antiretrovirals placed significantly less importance on information from their HIV-physician than those accepting antiretrovirals. Poor and less well-educated participants (in particular African-American women) had less knowledge of resistance. Most, but not all PLWH preferred to be actively involved in decision-making. The greater the desire for involvement, the more sources of information were used in decision-making. Knowledge of resistance was not significantly associated with the preference for involvement in decision-making.
Conclusions: Physicians and publications, particularly those targeting PLWH, play a key role in informed decision-making. Physicians need to ensure that PLWH are informed and understand resistance as a consequence of non-adherence. Patients' needs for information are different from their desires to participate in decision-making. Regardless of their treatment knowledge, most PLWH want to be involved in the decision-making process.