HIV Podcast

Retention and Care for Patients With HIV

Michael Saag, MD; Michael Mugavero, MD


May 04, 2022

This transcript has been edited for clarity.

Michael Saag, MD: Hello. I'm Dr Michael Saag, and welcome to Medscape InDiscussion: HIV. Today we're talking about retaining patients with HIV in care. I picked this topic because sustaining viral suppression over time among patients on antiretroviral therapy is tightly connected to retention and care. Let's start with a case. A 32-year-old man established care in the clinic 3 years ago. He is currently on single-tablet dolutegravir/3TC and has achieved undetectable levels of HIV RNA. However, he intermittently uses crystal meth, and when he does, he usually misses his clinic visits. He has now missed two clinic visits in a row and has not picked up his antiretroviral therapy medications for 2 months. My guest today is Dr Michael Mugavero, a professor of medicine and infectious diseases at University of Alabama at Birmingham and associate director of the UAB Center for AIDS Research. Michael is internationally recognized for his pioneering work on the importance of retention in care and, in particular, the impact of missed visits on poor outcomes and mortality. Welcome, Michael.

Michael Mugavero, MD: Thanks for having me.

Saag: Can you briefly describe some event or scene early in your career when you realized that you were going to dedicate a large portion of your career to the treatment of HIV?

Mugavero: I was a second-year medical student in 1996, a very pivotal year in terms of HIV therapy with the advent of combination antiretroviral therapy. When I moved into my third year of medical school, I had a chance to rotate at the HIV clinic in Nashville and to see the transformation of this uniformly fatal illness into a condition where there was treatment and folks could adhere to therapy and live long, healthy, productive lives. It was really empowering and motivating. It was really at that point that I knew I wanted to focus my career on HIV medicine. And from that point on, so many experiences validated that it was the right path for me.

Saag: And that segues pretty nicely into our topic for today, because having success with antiretroviral therapy means that patients have to remain engaged in care and remain on their antiretroviral therapy. Can you put in your words the importance of retention and care beyond what I just said?

Mugavero: Retention in care: It's so simple yet so complex. At a very basic level, for persons living with HIV to access therapy after becoming aware of their HIV diagnosis, they have to get linked to care and come to provider visits. Over time, there are so many layers beyond attending visits; what does it mean to truly be retained or engaged, to be activated and engaged in one's care? At a very basic level of retention is coming to visits consistently. But when we delve deeper into this, there's so much more about what it really means in terms of being retained and engaged in one's care.

Saag: Obviously, it's important for the individual when they're retained in care; their viral load usually stays suppressed. What about for society at large, the importance of keeping people retained in care on their treatment, especially when we're focusing on ending the HIV epidemic in the long run?

Mugavero: With the advent of — and then the science validating — treatment as prevention for persons living with HIV, achieving and sustaining an undetectable viral load prevents the potential for sexual transmission of the virus. Folks being in care, being on therapy, being virally suppressed is a powerful, powerful tool for prevention. Critical to this too are empowering messages like "U=U." The idea of being in care, being suppressed — I now have this power for prevention as well as my own personal health.

Saag: Undetectable equals untransmissible: U=U.

Mugavero: Yes, sir.

Saag: Let's look at some of the barriers that you've seen patients encounter that interfere with their ability to keep their visits or to remain engaged in care.

Mugavero: There's so much science out there, and it ranges from things that would come to mind immediately in terms of competing life demands: "I've got childcare"; "I've got a job"; "The clinic hours don't accommodate my schedule and my life schedule"; "I don't have a consistent ride"; unstable housing, food insecurity. There are those more structural barriers — social determinants — that are very clear, and we're fortunate in the HIV care space through the Ryan White program that we have a lot of resources to address those conditions that many other providers don't have. Beyond that, there are so many other layers of complexity. So it's things at an interpersonal level, whether it's stigma that is internalized, or external experiences at the clinic itself — is the clinical place accommodating and inclusive of all persons? When I go there, do I have a sense that because of who I am or my identity, I'm treated differently and am not welcome? Going from the individual level to an interpersonal one, do I have the support I need in my life in the clinic, even the clinic itself? Are there things structurally about the clinic that make it hard for me to keep coming there or wanting to keep coming there? And then we can go even further out, right into the community and into policy — other systems and policy factors. So when we break it down, I think it's easy to first jump to job, childcare, transportation as barriers. But really, if we want to think about it comprehensively, it goes all the way out to policy factors.

Saag: What's always struck me is how deeply engaged HIV care is as an entity that focuses on this. And yet all these other barriers, all these other issues are at play with anyone seeking care. Do you hear this type of discussion going on with other disciplines of internal medicine?

Mugavero: I'd say increasingly yes. If you look at the literature from 20, 30 years ago around care engagement, most of the research was in the areas of mental health and treatment, HIV, and also in Canada and the UK, where there was a system of care where differential retention impacted not just the patient but also the capacity of the system and seeing other folks. Fast-forward 20 years: A lot more of these same factors are impacting access to cancer care, diabetes care, hypertension care. And there's more research in those areas, too.

Saag: You mentioned Canada, which has a system that has a safety net for most everyone. You alluded to the Ryan White Care Act a second ago. We have that, which basically provides that safety net that, say, other patients with even hepatitis C, a monoinfection, or diabetes who don't have health insurance — it creates a huge barrier for retention and care. Tell me how much you think the Ryan White Care Act plays into our ability to help people remain engaged in care.

Mugavero: I think it plays a substantial role. The Ryan White Care Act created the medical home in many ways, a healthcare system where you have an interprofessional team. I don't know of many clinics where you have a social worker, nurse, physician, nutritionist, and linkage coordinator. Just the number of interprofessional persons focused on the care of that individual and addressing their different needs, not just the medicine, the treatment, the viral suppression — that's important. But so many other things about this person are impacting how they're navigating that and being able to do that. A lot of why we are able to do that is because of the Ryan White Care Act. It allows the resources to provide not just the medicines, not just the medical care, but those wraparound services. And a lot of those services are addressing the modifiable drivers of why folks are not retained in care and staying in care.

Saag: Let me transition to how you measure retention and care. What are your approaches? I'd like to dig right into your expertise; tell us what you think are the most important things to follow.

Mugavero: Thank you for asking. It's really complex. How do you measure retention? It's a different answer for different audiences. There's a lot of nuance. I think a take-home point is that retention is a process longitudinally. Like going back to the case, this individual has variable patterns of retention. It might vary over time based upon different circumstances. So the number-one take-home is that retention is a dynamic process. Just because someone has been retained well for 2 years doesn't mean they're always going to be retained well. There are some really elegant studies showing patterns; there are some folks who seem like they're always retained and some folks who really struggle to get into care. But a majority of people cycle in and out of what we might call "good and bad retention." In terms of measuring for clinical audiences, I like to focus on what is immediately available in the clinic. In the clinic and uniquely in the clinic, in real time, someone's on your schedule. Did they make that appointment or did they not? And the power of that is that only clinics know that. When we send public health surveillance data, no one else knows that. So the clinics have that information and they have it immediately. It's actionable right now. So many of the measures of retention used for quality and other purposes lag by 12 months. So you wait 12 months and you say, "Did someone have this number of visits or they missed it?" Then you wait 12 months and, number one, you've missed all this time to act. But number two, by the time you try to act, that person is gone, their phone number doesn't work, and the address they were at has changed. In measuring retention, it's a different story for research purposes than for clinical care. I really focus on that missed visit because it is so immediately available and actionable uniquely to clinics and clinic providers.

Saag: So let's dig in a little bit more — your best definition of a missed visit.

Mugavero: Missed visits are visits that were scheduled and were not canceled in advance by patient or provider. What is often referred to historically as a no-show visit is kind of the way it would be referred to in the field.

Saag: So how is that different from a canceled visit in your mind?

Mugavero: If someone calls in advance to cancel, from the clinic perspective, that's an opportunity to reschedule and have somebody else fill in that spot, whether it's an urgent visit or someone else. So from the clinic's perspective, something canceled in advance is something that could be acted upon and gives the clinic some flexibility in their scheduling. At an individual level, the distinction of someone who had the time-space awareness to recognize when the visit was to make that phone call, to let the clinic know they couldn't make it, is telling us something about the context of their life and their awareness — that they were able to go through those steps. The person who doesn't show for the visit and doesn't call in advance, we're not judging them, but it's just different — that this appointment was on their calendar, it was or wasn't on their radar. We don't know. All we know is that they didn't make it for some reason that we can't ascertain until we try to follow up with them.

Saag: How does a missed visit translate into clinical outcomes, from your experience?

Mugavero: Our group, along with some others, did some of the earliest studies of this going back 15-plus years (see Mugavero, Horberg), and consistently there's been an association. So someone misses a visit and then you start a survival clock, and you compare it with folks who didn't miss visits. The studies have consistently shown that there's upwards of a threefold increased mortality risk, so in the first year of care, someone who misses a visit compared with those who attend all their visits has a threefold increased risk of mortality. And I will say this has been something that, through systematic review over time, across contexts, across culture, across care systems, there's a consistent association. Whether it's an antiretroviral visit in one setting or a clinic visit in another setting, consistently there's a dose-response relationship between these missed visits and the hard outcome of all-cause mortality.

Saag: So, let me state this again: For a single missed visit in the course of a year compared with someone who didn't miss a single visit, there's a threefold increase in mortality.

Mugavero: These are some of the earlier studies and there's a range on this, but you consistently see anywhere from a 1.5- to a threefold increase. If you have the ability to look in a more dose-response way, so more missed visits, the higher that risk goes up. The really key take-home is that the missed visit is not causally responsible. That didn't cause that person to subsequently die earlier than they might have. That missed visit for us as providers is a call to action. Someone is inviting us to ask, "What's going on? Is it something to do with housing, transportation, childcare, work?" Is it like the case you shared earlier? You know — I'm back using and I'm struggling. Or is it something else? That missed visit is such a call to action for us as healthcare providers to pay attention and try to understand what's going on in someone's life.

Saag: What are some practical things that folks can do when they see a missed visit, when they see a no-show? What are the approaches they can practically take to intervene at that moment?

Mugavero: You start with "someone missed the visit." What can you do in a more reactive way? Enhance personal contact and outreach from someone in the clinic who knows that individual, has been shown to improve getting them back into the clinic, whether it's their provider, their nurse, their social worker, their linkage coordinator. If someone is able to contact them within a few days… And again, the contact is nonjudgmental: "Hey, we missed you today. What happened?" You know, to try to understand and troubleshoot. What we've really focused on more recently is, if clinics have more resources, rather than reactively wait for someone to miss, can we proactively look at our schedule and say who is most likely to miss? And not surprisingly, the best predictor of the future is the past. So persons who have missed visits in the past 12 months are significantly more likely to miss that next appointment. And again, it's a dose-response kind of thing, based upon if someone missed zero, one, two, three. So if there's capacity, looking at that schedule, looking back at the past, and trying to say who is most likely to miss gives an opportunity to be proactive. Clinics have different systems, but rather than the robocall, [make it personal:] "Hey, this is Mike Saag. I'm your doctor. You're coming in next Wednesday afternoon. All good. Can you make it? Do you need a ride? Do you need me to get you with my social worker?" So that's a very long answer to a reactively personal call, but even better, proactively figuring out who's at highest risk to miss and then reach out to them ahead of time.

Saag: Mike, are there data to show that when you do that and you actually prevent a missed visit, or you reconcile a missed visit, that that also translates into clinical benefit? Have we gotten that far with this?

Mugavero: We have short-term data. There was a study done with six different sites that use this model of enhanced personal contact. It identified an increased-risk group based upon previous patterns of behavior of missed visits and showed that with a six to eight day and a two to three day enhanced personal contact call. So it's not a reminder call; it's not just, "Hey, your next visit." It is, "Hey, how are you doing? What's going on? How are the kids? How's the pet?" It's really trying to not only do a reminder, but troubleshoot so that if there are reasons someone might miss that visit, we're in advance trying to work with them to troubleshoot, to address those things and make sure they can make it to the clinic.

Saag: I mean, above all, if nothing else, it just says "I care about you."

Mugavero: "I care about you." I think that's right.

Saag: And that builds trust, which is fantastic. Well, let's go back to this case. You've already alluded to it: intermittent, misses visits. When he's not using meth, he's more on top of things. So you've seen that he's now missed two visits in a row. What's going to be your approach for this guy?

Mugavero: The approach is hopefully being able to talk in person, whether it's setting up a telehealth visit or a telephone visit. But I think it's an in-depth discussion of — in a nonjudgmental way — "What's going on? You're back using; why are you using? Who are you using with?" And just trying to understand the context of what's going on in his life and other factors, and not focusing on "You need to come back to the clinic; you've missed two visits." That's irrelevant right now. It's really understanding the context of what's going on in his life, trying to figure out how we might address some of those things — not just the meth use, but the context of his lived experience that might then support getting back into care. And whether that means telehealth for a while, or in person, I think we're so fortunate to have that interprofessional care team because sometimes for different patients, they have a better connection with different folks. Sometimes it might be me as a doctor. A lot of times it's the social worker or their clinic nurse. But the challenge is it's time- and resource-intensive, the retention in care. There are no easy fixes. It really is a very personal time-, resource-intensive opportunity to engage folks and let them know you care.

Saag: And it's very individualized, as you've said. Unfortunately, our time is running out. I knew this would go fast. Let's go back and revisit the take-home points that you'd like to drive home as we wrap up.

Mugavero: One is the idea that retention is dynamic. It changes over time, so we've constantly got to be monitoring retention for each person under our care. The power of the missed clinic visit — for us in clinical care settings, this is a unique opportunity and an invitation to probe deeper. It's the same thing if someone says they missed their antiretroviral; they're inviting us to probe and ask and understand why. If possible, be proactive instead of reactive. Instead of waiting for folks to be poorly retained or for missed visits and then trying to follow up with them, if the resources are there to identify higher-risk patients, try to make sure you do whatever you can with your best resources available, and deploy those in advance to prevent poor retention vs reacting to missed retention. I think that's another big take-home.

The last is for all of us to have grace. I think we're lucky in our care system with not having judgment. If folks are not missing visits, it's for a reason. I think we're fortunate with the caregivers in HIV. Do you have that grace and understanding, and approach folks in a nonjudgmental way? The goal is that while we want them back in clinic and on medicines to control HIV, we've got to be ready to meet them where they are, and it might be that getting them into stable housing and food access is what's most important; it might not lead to them getting back to the clinic immediately. But that's the right thing for us to do as care providers.

Saag: Fantastic. And that connection can be like you said: Just a phone call could be a televisit. A lot of options are available to us, but it all has to be individualized. And that benefit, as we've alluded to over and over, is for the individual. But it's also for the community at large because folks who are retained in care have a higher degree of suppressed viral replication, undetectable virus. That's obviously good for the patient, but it also reduces transmission in a prevention way through U=U. Michael, thank you so much for your time today. This was a fantastic review and a lot of practical take-home points. Thanks for joining us.

Mugavero: Thanks for having me.


HIV Undetectable=Untransmittable (U=U), or Treatment as Prevention

Ryan White Care Act

Beyond Binary Retention in HIV Care: Predictors of the Dynamic Processes of Patient Engagement, Disengagement, and Re-entry Into Care in a US Clinical Cohort

Missed Visits and Mortality in Patients Establishing Initial Outpatient HIV Treatment

Beyond Core Indicators of Retention in HIV Care: Missed Clinic Visits Are Independently Associated With All-Cause Mortality

Missed Office Visits and Risk of Mortality Among HIV-Infected Subjects in a Large Healthcare System in the United States

Enhanced Personal Contact With HIV Patients Improves Retention in Primary Care: A Randomized Trial in 6 US HIV Clinics

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