Adolescents and young adults are disproportionately impacted by HIV in the United States.* Youth living with HIV (YLH) face extraordinary barriers to care, especially when it comes time to transition from their pediatric clinic to an adult clinic. Of the ~40% of young adults that make it to an adult clinic, nearly half will drop out of their care program in 1 to 2 years.**
In addition to this transition from pediatric to adult care, these adolescents have to navigate a system that does not always integrate well with their everyday lives. In a world where communication, career development, banking, and entertainment all have gone mobile, healthcare often fails to reach youth where they are.
The iTransition team noticed.
They recognized that YLH needed a resource that not only bridged the gap between pediatric and adult care but one that fits seamlessly into their lives. Coming together from UNC Greensboro, Emory, and the Children’s Hospital of Philadelphia to collaborate on solving this problem, this team developed a digital intervention to support young adults with HIV in their care transition.
In this interview, Dr. Amanda Tanner (PhD, MPH at UNCG), Dr. Sophia Hussen (MD, MPH at Emory), and Dr. Nadia Dowshen (MD, MSHP at CHOP) describe their respective paths to this project, the digital health intervention they created on Pattern Health’s platform, and their vision for the future of digital health in iTransition and beyond.
Q: You all have impressive careers in HIV care and adolescent medicine. Could you share what drew you to this field or what inspired you to work on the iTransition project?
I did my training in Philadelphia, with Nadia. We were in medical school and residency at the same time. She was a couple of years ahead of me, and was always someone I could look up to and admire. Like her, I have a lot of interest in adolescent health and HIV.
My residency was in both internal medicine and pediatrics, so I worked on the adolescent side, and on the care of older adults. One of the most common issues that came up is this issue of transition, and the stark contrast between pediatric & adolescent care. Young adults are expected to handle their care — this large responsibility — with full autonomy.
In my clinical role, I work on both sides of the transition and so the iTransition research project followed naturally.
As a non-clinician, I came to it with a slightly different perspective. In public health, we really focus on the prevention piece of it, and think of care as a prevention tool. As we think about young people who are taking their medication and are virally suppressed, they can’t pass HIV on to sexual partners. So we think about it as an individual health promotion as well as community health promotion.
I was working on a lot of “linkage to care” projects, and one of the things that kept coming up was that we do such a good job keeping our adolescents and young people engaged with care. But then there is this dropout as they switch to adult care because of differences in clinical culture, background, and accessibility of adult clinics.
So the natural next step was to think of ways to support that process. iTransition was born!
I came to this project with a long-term interest in adolescent health and how it is a period of transition where we can really make a difference in young people’s lives to develop habits and improve their health so they can become healthy adults.
When I started doing HIV care, it was the beginning of the era of text messaging. Many times when I would go to see patients who were living with HIV and talk to them about starting their medications, they’d often be sitting there texting on their phones and not paying attention to me. I saw that as an opportunity: if they are using these phones all the time, we need to use phones as well to help them take care of their health.
That’s how I got interested in doing my first study with mHealth and HIV prevention–daily text messaging reminders for taking medications. That eventually became one of the CDC evidence-based interventions for antiretroviral therapy adherence for youth living with HIV.
So when Amanda and Sophia were interested in the iTransition project, I was really excited to bring the aspects of what we had previously developed in terms of digital health for young people to the table.
Q: Could you describe the iTransition project and how you designed it to address the gap between adolescent and adult care?
A lot of work that is being done to prepare young people for transition is focused very heavily on the adolescent clinic or the pediatric clinic. iTransition approaches it in a slightly different way, in that it has components that are youth-facing. It’s more comprehensive, featuring content about medications, how you identify an adult provider, how you get to an adult clinic, and what things will look different.
We have advice from youth who have recently undergone the transition process to adult care, so that participants can address any concerns after developing a relationship with the adolescent side. And then, we also have components that are directed at the clinical staff on the adolescent side and the adult side.
We created a multi-level approach in trying to support these youth, and not just put all the responsibility on them.
It is also worth mentioning that we spoke to many young people with HIV to help inform our design of the iTransition program.
We have a Youth Design Team made up of youth with HIV in both Atlanta and Philadelphia who have been involved in the whole process, both in the initial assessment and the Beta testing to get feedback. It has been an iterative development process. We also have a Provider Design Team that comments on info that would be helpful for the youth, as well as the pieces that they [providers] need to be supportive for the young people.
Q: I was so impressed by your strategy to include the voice of the target user in your design for this project. When you asked for input from the target users, did you receive any surprising insight?
I think one example was that in some of our early conversations, they emphasized the importance of social support and family — things that weren’t necessarily our original focus. We were thinking about the clinic and that aspect of care. So we incorporated a few features in response to that.
The other thing that I thought was really cool was just how much of a relationship they [YLH] have with their adolescent clinical staff and how that is missing. We developed Provider Profiles based on one of the popular dating sites — both Nadia and Sophia have their provider profiles in there!
It’s not just “Here I am, this physician” but “where am I from, what do I like to do, and so on” so patients can get a better sense of that physician as a person and not just a provider. This helps facilitate relationship development in an adult clinic setting.
I hear from young people frequently that they feel like when they go to a new adult provider after being with a youth provider for a very long time, that they have to tell their whole story all over again. They don’t often want to do that. They also feel like people only want to know specific things about them related to HIV, even though living with HIV is just one piece of who they are.
I think they were interested in having these profiles so they could get a more personal introduction to the provider, and so that the provider could have a more personal introduction to them. This was definitely one of the features that we wouldn’t have come up with on our own without the youth input.
Q: What kind of impact or future do you see for iTransition? What are your hopes for this program?
Ultimately, I think it would be great if it could be integrated into the electronic medical record system, especially on the provider side.
I think it would be great if there was a way to seamlessly incorporate appointments without requiring providers to use a separate website. That is part of the long-term plan. Also, my hope is that iTransition reminds people to be more thoughtful about the transition in general.I hope that it will keep the topic more on the forefront of the pediatric and the adult care side.
Developing the app in a way that takes a practical approach — including youth voices and provider voices all throughout the process — will make it more likely that it is something that we can actually implement into clinical care. There have been many related interventions developed, but very few of them have actually been implemented early into clinical care. I have high hopes that this is one that will actually make that transition.
My hope is that iTransition could also work for young people living with other chronic diseases or who are going through a transition process in healthcare in general.
The iTransition approach could apply to many other chronic diseases that young people are living with, especially others where there might be stigma, like there is for HIV. There might be a lot of parallels in what we develop to support young people living with other chronic diseases.
Q: Do you expect digital interventions to become more common in research and clinical applications?
I think COVID offered an opportunity to see telehealth in different ways. Digital health interventions can be really supportive, particularly when they are linked to standard approaches.
I think we may see some stagnation as there are just SO many apps available today. The question becomes — how do we then move them into a place that can be sustained and integrated into routine clinical care?
Now, basically every intervention that we do has to — or should, in my opinion — have some digital health component. That is the reality of how we live our lives now. I think it is going to be a part of the health research we do going forward.
About the iTransition Team
Amanda E. Tanner, PhD, MPH is an associate professor of Public Health at the University of North Carolina Greensboro. She is also an affiliate faculty in the Department of Social Sciences and Health Policy at the Wake Forest University School of Medicine. Dr. Tanner’s research focuses on using technology for HIV prevention and care engagement for adolescents, young adults, and other marginalized communities. Dr. Tanner and Dr. Hussen are the principal investigators of the iTransition study.
Dr. Sophia Hussen, MD, MPH is a physician and sociobehavioral researcher with an interest in HIV among adolescents and young adults. In particular, she conducts research focused on young Black gay, bisexual and other men who have sex with men, with the goal of improving HIV care outcomes and general well-being in this population. Other areas of interest include mental health service utilization, qualitative research methods, and HIV- and mental health-related work with Ethiopian communities.
Nadia Dowshen, MD, MSHP is a faculty member at PolicyLab at Children’s Hospital of Philadelphia (CHOP) and serves as Director of Adolescent HIV Services in the Craig Dalsimer Division of Adolescent Medicine at CHOP. She is also an Associate Professor of Pediatrics, University of Pennsylvania School of Medicine and a Stoneleigh fellow. She co-founded the CHOP Gender and Sexuality Development Clinic which provides medical and psychosocial support to over 2000 transgender and gender diverse children and adolescents. Dr. Dowshen’s research focuses on using youth-friendly technology to improve health outcomes for adolescents living with HIV/AIDS as well as research related to STD and HIV prevention and treatment and achieving health equity for marginalized youth.
*Centers for Disease Control and Prevention. HIV testing, infection and risk behaviors among youth–United States. Morbidity and Mortality Weekly Report 61 (2012).
**Tanner AE, Philbin MM, Chambers BD, Ma A, Hussen SA, Ware S, Lee S, Fortenberry JD (2018). Healthcare transition for youth living with HIV: Outcomes from a prospective multi-site study. Journal of Adolescent Health, 63(2):157-165. DOI: https://doi.org/10.1016/j.jadohealth.2018.02.004
***Hussen, S. A. et al. Transitioning young adults from paediatric to adult care and the HIV care continuum in Atlanta, Georgia, USA: a retrospective cohort study. Journal of the International AIDS Society 20 (2017). PMCID: PMC5705166.