Research Looks at Intervention Methods for Youth Living with HIV

A group of adolescents.

New research from Rivet Amico

Associate Professor of Health Behavior and Health Education

Over a million teenagers and young adults in the US live with HIV, and they make up over 20% of all new HIV diagnoses each year. 

The University of Michigan-led Triggered Escalating Real-time Adherence (TERA) study looks at the effect of a medication adherence intervention on HIV suppression among US youth, ages 13 to 24, who had detectable viral load—meaning their HIV was not suppressed. Having suppressed HIV is associated with better health and very low chances of passing HIV to someone else. The intervention was a 12-week program that included remote coaching sessions, monitoring dosing with an electronic dose monitoring “smart” pill bottle, and outreach from coaches for late or missed doses. 

We spoke with Rivet Amico, associate professor of Health Behavior and Health Education at the University of Michigan School of Public Health and principal investigator of the work, to learn more about the study and the need for continued research to improve the well-being among youth living with HIV.

What were some of the key findings based on the research?

There were two things of note that we found in our study:

  1. We did not see differences in the percentage of youth with suppressed viral load after the intervention period or at later time points, but we did see significant improvements in adherence measured by the smart bottle, at 12 and 24 weeks.
  2. Qualitative data suggested that youth felt having a health coach who was separate from their care team was helpful and valuable.

Why create an intervention like this? Does TERA differ from conventional interventions?

More interventions focused specifically on youth living with HIV are needed. There are few interventions available in comparison to programs focused on adults.

The TERA intervention is the first to offer virtual coaching, where the coaches are remote and available continuously to talk through issues and potential medication adherence challenges, and to tether a smart bottle to coaching such that coaches will proactively reach out to youth if the bottle remains unopened around dose times.  

Adherence is more than remembering to take your medication—it’s impacted by social support, economic stability, mental health, and stigma. Interventions that see youth in their larger context, leverage strengths and facilitate access to and development of resources are critically important.

In line with differentiated care, many youth will do just fine managing their HIV. For the proportion who do not, directing them to highly tailored intensive services is useful. Many clinics do not have ready access to intensive adherence support services. A centralized program that could enroll and intensively engage youth through remote and text/cellphone based contacts could serve youth across the US whose local clinics may not have the capacity to have such programs.  

Why do you focus on this demographic?

Youth living with HIV—acquired parinatally as infants or through exposure from sexual contact or injection drug use—have worse outcomes across all aspects of living with HIV in comparison to adults. Inadequate adherence to medication and lack of viral suppression are highly consequential to youth, as the development of drug resistance can limit future treatment options and treatment presently remains lifelong. 

How do the findings in your study compare to other studies on HIV and adolescent health?

In terms of adherence, the results are promising and position the intervention as potentially offering unique advantages. Because the intervention did not impact viral suppression, the intervention should likely be revised to consider longer periods of implementation or other adaptations that could better leverage the advantages seen in adherence. 

How does your study add to existing literature on this topic?

There are few interventions that work with youth who have viral loads that are not suppressed. Our study uniquely contributes to better understanding factors influencing this, and strategies to address it. 

Are there any learnings that were surprising about this work?

Previous literature has established a relationship between adherence and viral suppression. The extreme of non-adherence and no benefit from the medications is clear. However, the relationship is not one-to-one. There are cases where adherence is not yielding suppressed viral load and where people maintain suppressed viral load for a period of time without medication. 

In cases where someone is taking a medication regimen that does not work because their virus has resistance to all or some of the medications, you would not expect adherence to relate to suppression—they could be highly adherent and still not suppress their virus. 

We don’t know how many youth in our study may fit that situation; we do know there were many youth who were on their second or third HIV treatment regimen, so we can’t rule out the possibility. We were, however, surprised to see an effect on adherence without the downstream expected effect on viral load. We are looking into why this was. 

What would you like people to take away or learn from this work?

Youth living with HIV have a number of challenges in managing to take medication, and right now, taking medication will be a lifelong endeavor because there is no cure for HIV. Taking medications for any condition is complicated. When it is for HIV, there are structural and community-level drivers that not only impact non-adherence but also take root in one’s self-perception and can challenge mental health and well-being generally. 

Regardless of whether or not interventions impact viral suppression, we need strategies to improve well-being among youth living with HIV, ways to promote positive self-regard, reduce stress, and encourage growth and development that go beyond pills-to-mouth. 

Concerted efforts to offer youth living with HIV the tools for physical and mental health remain critically needed.