Development of a patient-provider decision aid for HIV post-exposure prophylaxis

PROJECT SUMMARY
While many questions remain regarding specific rates for HIV PEP preventable transmissions related to the
real world challenges of HIV seroconversion and measuring risk, we do know that: 1) among people who
experience a known exposure, HIV PEP is effective and potentially cost saving if initiated in a timely manner
and completed fully; 2) patients who have been offered, accepted, and even completed HIV PEP continue to
report confusion and inaccurate information regarding its use; and 3) in many contexts decision aids have been
demonstrated to improve patient reported knowledge regarding decision making, decrease decisional conflict,
and improve patient-provider communication. Given these gaps, the long-term goal of this work is to develop,
refine, and validate a technology-delivered decision aid to assist providers in better understanding and
effectively implementing HIV PEP in practice, and assist patients to better understand the decision they are
making when provided with HIV PEP as an option so that they may more successfully 1) make the decision,
and 2) complete the entire 28-day course of medication when they decide to initiate HIV PEP.
The proposed decision aid leverages a known clinical opportunity to engage patients who are at risk for
seroconversion in initiation of HIV PEP. By creating an internet-delivered multimedia tool that: 1) removes
provider biases regarding what qualifies as an HIV risk from the discussion process; 2) slows the process of
information sharing and decision making down and presents information in short, repeatable pieces; and 3)
incorporates an opportunity for patients to reflect on key aspects that have been shown to impact decision
making and adherence (e.g. social support/stigma, HIV risk perception, cost/access, side effects) prior to
making the decision we anticipate that patients will have less decisional conflict, feel more confident about their
decision, and for patients who initiate HIV PEP, be more able to complete the entire regimen.
Lastly, the proposal includes relationship building via a community advisory board to support all steps of
decision aid development and subsequent testing. Principles of design justice (e.g. adopting co-design
methods, developing specific mechanisms for accountability, centering the needs of marginalized users) will be
used to partner with this group of patient and health care providers to design specific aspects of intervention
content, and plan details of the future efficacy testing study.

Grant Number: 5R34MH129217-03
NIH Institute/Center: NIH
Principal Investigator: Jocelyn Anderson