Developing and assessing acceptability of a shared decision-making tool for selecting among HIV pre-exposure prophylaxis options in the United States of America

Abstract

We developed a pre-exposure prophylaxis (PrEP) shared decision-making tool to support people who could benefit from PrEP in reaching their prevention goals and preferences when considering two effective PrEP modalities, oral or long-acting injectable (LAI) PrEP, in partnership with their healthcare providers (HCPs). This 2-phase study included formative research to develop a PrEP shared decision-making tool prototype followed by a pilot study to determine prototype acceptability. For the formative phase, we conducted semi-structured qualitative in-depth interviews with a diverse sample of people who could benefit from PrEP (n = 41) and HCPs (n = 20) in two community-based sites in Washington, DC, prior to and shortly after LAI PrEP became available in December 2021. Insights from in-depth interviews informed development of a PrEP shared decision-making tool prototype in both English and Spanish. This prototype was piloted in one-on-one mock clinical encounters with 37 people who could benefit from PrEP and 11 HCPs, in the two DC sites and at a university-affiliated clinic in Chapel Hill, North Carolina. After these encounters, people who could benefit from PrEP and HCPs were interviewed independently about acceptability of the prototype’s language, visuals, content and flow as well as the usability, utility, and feasibility of the prototype to support informed shared decision-making. In the formative phase, people who could benefit from PrEP had low awareness of and high interest in LAI PrEP. They and HCPs agreed that side effects and efficacy should be a primary focus of a PrEP shared decision-making tool. Participants in the mock clinical encounters found that the prototype filled information gaps, supported shared decision-making regardless of an individual’s experience with PrEP, and systematized, streamlined and normalized conversations around PrEP choice. Testing the effectiveness of the prototype in a larger-scale evaluation is highly warranted as the field seeks to address ongoing inequities in PrEP uptake.