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

Heidemarie Kremer, Gail Ironson

Research output: Contribution to journalArticlepeer-review

13 Scopus citations


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/μl 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.

Original languageEnglish (US)
Pages (from-to)34-42
Number of pages9
JournalEuropean journal of medical research
Issue number1
StatePublished - Jan 31 2007


  • Antiretroviral therapy
  • Decision-making
  • Patient involvement
  • Patient knowledge
  • Sources of information

ASJC Scopus subject areas

  • Medicine(all)


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