People living with HIV: sources of information on antiretroviral treatment and preferences for involvement in treatment decision-making.

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.