Brown University researchers propose thinking about pre-exposure prophylaxis (PrEP) as a nine-step continuum of preventive care, one that improves uptake and focuses on retention in care.
Over 36 million individuals worldwide are living with HIV/AIDS and the disease has accounted for over 35 million deaths. The good news is, with new treatment options, such as antiretroviral therapy (ART), an HIV diagnosis no longer equates to a death sentence. Those who are at particularly high risk of infection can now take pre-exposure prophylaxis (PrEP) as a means of prevention. However, adherence is key with PrEP, and oftentimes, sticking firmly to a treatment regimen can be particularly challenging.
Keeping this in mind, researchers at Brown University are looking for ways of improving preventive care. To do so, they have proposed a new system “for understanding and evaluating how PrEP is implemented in clinical practice,” according to a recent press release. In this system, they view PrEP care as a continuum of care consisting of nine steps, which they hope will help practitioners better assess where patients might cease the preventive care that could protect them from infection.
In an email exchange with Contagion®, Amy Nunn, ScD, MS, associate professor at the Brown University School of Public Health, explained the importance of a continuum. She said, “It is helpful to view PrEP care as a continuum of ‘steps’ to understand exactly how we can provide them care that responds to their HIV prevention needs. Some patients need help understanding their HIV risks, some need help navigating the medical system, some may have trouble adhering, and some may not be able to afford medical services. We felt it was important to identify these steps.” She continued, “We thought it was important to highlight challenges related to uptake and care, both of which have been somewhat overlooked in public policy discussions related to PrEP. We want to emphasize retention in care because many people are lost to follow-up, and retaining people is important for reducing their HIV risks.”
When it comes to PrEP programs, healthcare practitioners have noted that a number of individuals face difficulties when it comes to adhering to their prescribed treatment regimens; this happens for a number of different reasons depending on each patient. The following factors can make adherence a challenge: a busy schedule can make it harder to take medications on time, troublesome side effects “from interactions between HIV medicines and other medicines an individual may take,” alcohol/drug use that may interfere with daily life, and some individuals simply do not have health insurance and cannot afford HIV medications. According to the Brown researchers, at first, in studies, PrEP adherence seemed “promising,” but they found out that real-world clinical settings are much different than research studies.
In an email interview, Philip Chan, MD, co-author of the paper, assistant professor of medicine at Brown’s Warren Alpert Medical School and an infectious disease physician at the Miriam Hospital, explained to Contagion®, “In research studies, people are often paid financial incentives to attend visits. In a couple of the large research trials, individuals reported taking the PrEP medication when they weren’t. We don’t fully understand why, but they may have continued coming to clinical visits because of the financial incentives for participating in the trial. In real-world clinical settings, there are no incentives for visits; patients usually present for clinical care because they are interested in improving their health and well-being.”
In a study conducted last year, the researchers took a closer look at clinical programs in cities in Rhode Island, Mississippi, and Missouri, and they found that more than half (60%) of the patients who signed up for PrEP ended up remaining in care after six months of treatment. In the current study, the researchers sought to identify areas of the process where interventions may be used to “improve access to PrEP” as well as the retention of the patients in care.
According to the press release, the researchers came up with nine steps:
The first three steps are dedicated solely to PrEP awareness. “These three steps are important to start the continuum of care. Specifically, we have noted that perceived risk of HIV is a key barrier to uptake in a lot of people (eg people who are at risk of HIV underestimate their risk). HIV is often heavily stigmatized because of the way it’s transmitted, and many people believe that they couldn’t actually acquire HIV,” explained Dr. Nunn.
The central focus of steps four through seven concern PrEP uptake. When asked if this will address patients’ socioeconomic status, as well as gender and racial-specific considerations that can impact PrEP uptake, Dr. Chan said, “We believe a culturally congruent response to PrEP care is important for ALL steps for the continuum. Populations of color as well as men who have sex with men (MSM) are at disproportionately higher risk for contracting HIV. While PrEP uptake has been high among white MSM, it has been much lower for African American and Hispanic populations. We have also found that people of color are retained in PrEP care at lower rates than their white counterparts. All of these challenges highlight the importance of tailoring programs to these specific subpopulations.”
For populations who are at highest risk, adherence to PrEP regimens are all the more important and potentially lifesaving. When it comes to the implementation of these steps, to ensure that those who are, in fact, at highest risk will be identified and assisted, Dr. Nunn explained, “We need healthcare providers who can provide culturally appropriate PrEP care services. We also have found that patients often need ‘wrap around’ services to navigate health systems. These can be provided by clinical support staff.”
Retention in care may be an even more important measure of success for the evaluations of the public health impact of PrEP than adherence, according to the researchers. For this reason, Drs. Nunn and Chan will be completing additional studies to understand when and why patients cease to be retained in care.
“We need to understand WHY people aren’t being retained in care and to explore different approaches to keep them in care. This may include ways to stay more engaged with patients, such as having a patient navigator who helps respond to clients’ specific needs,” Dr. Chan concluded.