Peter Rebeiro, Ph.D.
Peter Rebeiro, Ph.D. Terri Wilder

One factor that could help determine whether a person achieves an undetectable viral load is their health literacy, which is the measure of personal engagement and ability to seek medical care. One study examined health literacy's impact on viral suppression for a group of individuals living with HIV, over a study period of 14 years. Terri Wilder, M.S.W., spoke with study author Peter Rebeiro, Ph.D., at CROI 2017, in Seattle.

Terri Wilder: Please take us through your study, from backgrounds, methods, to results and conclusion.

Peter Rebeiro, Ph.D.: This study was conducted at the Vanderbilt clinical cohort in Nashville, Tennessee. It's a Southeastern regional HIV cohort. The purpose of the study was to look at the impact of health literacy, which is a construct about personal engagement and ability to engage in medical care, and its influence on achieving a very important HIV outcome of viral suppression. That's critical for individual disease progression and population-level prevention of transmission.

In this study, we examined different demographic factors, along with health literacy-level influence on viral suppression and the probability of being virally suppressed during the study period. It took place between 1998 and 2012. Health literacy was measured at a single time point. But it's been validated to be relatively stable in adulthood. So, we felt that was sufficient to capture health literacy over time.

We used regression methods to examine health literacy score, age, sex, race, HIV risk factor disparities in viral suppression, while accounting for things like formal education, health insurance status and a few other demographic factors that we had.

The main findings were that, even accounting for these other factors, the worse your health literacy was, the more likely you were to not have suppressed viral load; that is, you were more likely to have viremia if your health literacy was worse. Additionally, even after accounting for health literacy or holding health literacy constant or equivalent, we still found demographic disparities where younger individuals, younger patients, did worse. They were more likely to have viremia. Black patients were more likely to have viremia than white patients -- even holding health literacy equivalent.

Those were our main findings. We have some planned interventions, follow-ups planned. But, yeah.

TW: Tell me a little bit more about the characteristics of the study population.

PR: It roughly reflects the HIV-positive population in the Southeastern U.S. It's predominantly male. It's slightly majority white, but with a very large black patient population. It actually comprises more than 4,000 individuals in the total HIV clinical cohort; but only 575 received this random screening for health literacy. The clinic began in 1994, but this cohort began in 1998.

TW: When you say they were screened, are you saying -- was this a chart review?

PR: No. It's a live screen. It's a live survey that's administered. And they have to answer a few brief questions about their level of comfort with taking medication, or being able to follow medical instructions, or knowledge about their disease.

TW: In terms of an intervention, when we think about health literacy, is health literacy something that can be improved over time? Or, is it something that's pretty stable?

PR: Well, absent an intervention it's very stable. You can think of it -- I gave the example of, you know, regular literacy; you think once you're an adult you could make improvements to it, but generally, people read at about a constant level once they reach adulthood. But there are interventions that have been designed, like providing people with infographic cards to explain their medication dose and frequency, and route of administration, or to give them important information about how their medication affects their disease process. It is possible to improve their health literacy over time. There are other studies that have shown that.

TW: In terms of your conclusion, looking at age and racial disparities and viral suppression, is the intervention something that would be very targeted around age and race?

PR: It could be. It depends on how sensitive the clinic population would be. It's always important when you have key populations with an intervention like that. But, yes, it could be targeted appropriately to populations thought to benefit more from the intervention. And it could be simple things, like having infographic cards or pamphlets, and things like that.

TW: Can you talk to me a little bit more about the age disparities? For folks who work and live in HIV, particularly when we look at the South, I think most people are very familiar with the racial disparities and how that impacts HIV. But I'm wondering, as we're looking at an HIV community that maybe was diagnosed in the early years of the epidemic, and is aging, I'm curious what your age disparities look like, in terms of your conclusion.

PR: There will be a couple of effects. There will be the people who were diagnosed earlier and are aging. And there may be some people who have aged in the cohort. And then there are people who are newly diagnosed, either at young or old age. Those could be different dynamic populations. But, really, this is actually replicative of findings with other HIV continuing care outcomes -- like retention in care and antiretroviral treatment [ART] adherence, or ART receipt -- that older patients tend to be the ones who stay engaged in care and younger patients tend to drop out or have more loss to follow up.

It has been found in other cohorts and even larger national studies that younger patients have a harder time achieving viral suppression or maintaining viral suppression. It could be engagement in care; it could be behavioral factors; it could be that their risk behaviors are very different; their socioeconomic status may be different by age. There could be many, many factors at play.

TW: Just off the top of my head, not knowing the analysis as well as you do, maybe a targeted intervention would be young people of color.

PR: Yes, absolutely. That's something that's been rolled out. Actually, in Tennessee, with regards to PrEP [pre-exposure prophylaxis] interventions, young African-American men who have sex with men have been an important population for preventing transmission. And so, yeah, absolutely. It could be a good place to start.

TW: I think that, as folks think about interventions, there seems to be a lot of chatter. I know there's been some chatter, particularly in states like New York, around: What can we do about health literacy? Who can train medical providers about health literacy? And what does that mean -- help your patients become more health literate -- when you have 12 minutes to see your patient?

PR: Yes. Some of it is active and requires engagement of the provider. But some of it is fairly passive. So, if there are simple things, like having preprinted infographic cards that break down either medication instructions or HIV's impact on the body absent medication, having kind of simple information that's easily digestible at an appropriate grade level for your patient population. I think those are doable, and they may require a little extra effort and engagement on the provider's part, or maybe the nursing staff's part. But I think those are feasible.

TW: Great. Thank you so much.

This transcript has been lightly edited for clarity.

Terri L. Wilder, M.S.W., is a director of HIV/AIDS education and training in New York City.

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