Welcome to Stories of Care, a podcast from the American Medical Association and CDC's Project Firstline. In this episode, we are joined by Dr Amina Ahmed, Pediatric Hospital Epidemiologist and Division Chair of Infectious Diseases at Atrium Health, to discuss tuberculosis in the United States. Patient isolation and appropriate PPE for health care professionals can prevent tuberculosis from spreading while the patient is being treated, but isolation can be a difficult experience for patients and their families. Listen to how Dr Ahmed approaches infection control related to TB treatment using empathy and education.
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Megan Srinivas, MD: Hi, Dr Ahmed. Thank you so much for joining us today.
Amina Ahmed, MD: I'm so glad to be here. Sorry.
Srinivas: No. It's such a great pleasure to have you. Tell us about your background. You have a really interesting background.
Ahmed: Yeah, so, I actually grew up mostly in North Carolina, which is where I'm situated right now. I did my fellowship in Dallas, Texas, and that's where I fell in love with tuberculosis. There were a lot of kids that were referred to us from the health department or came in symptomatically, and then I loved the way that you could follow these patients long term, and most importantly, the way that they all responded to treatment. They always got better. So, once I left Texas to come back here to North Carolina.
I thought, oh no, I'm not going to see tuberculosis again or hear about it again. So, I did take on the role of being the state consultant for pediatric tuberculosis cases. So, I kind of keep my hands in it at all times throughout the state. And for what it's worth where I live is the most populous part of North Carolina.
So, we do see a fair amount of tuberculosis here.
Srinivas: So, what was it when you were in training that made you first say, "Hey, TB, this is fascinating. This is where I'm really passionate to be working in."
Ahmed: So, I definitely like the population. As you know, it's definitely the lower socioeconomic strata that is affected mostly by tuberculosis.
Definitely also the non-US born population, where I felt like we had a great role in communicating what all this meant to them. I feel like pediatricians do that pretty well. And then, I hate to say this, but it's the stories, right? It's the stories that these families would tell you. And then their progression. And because you're going to have a long-term relationship with these families, right? The mycobacteria grows very slowly and therefore the treatment takes a long time. And because you have that long-term relationship, you see how their understanding increases over time.
And then the stories get even more interesting as we go.
Srinivas: And you touched on something really interesting there, that even though people are living here in the United States for long periods of time, it's still those that have an immigrant background or a background of even relatives that are immigrants that are the ones that are most likely to be exposed, which first off is a huge inequity.
Can you tell us a little bit about the populations and the risks that we see?
Ahmed: Yeah, so we've noticed really for quite a while, a couple of decades now, that most of the patients or persons who have tuberculosis disease, at least in the United States, are non-US born, which makes sense. They come from areas where there's more tuberculosis, less treatment, more spread of tuberculosis, less infection prevention, certainly. And so, they come to the United States typically infected, not diseased, but typically infected. And then as we know, an adult who's immunocompetent has a five to 10% risk of developing disease in their lifetime. So of course, those are the populations where we're going to see it the most.
So, it is going to be the mostly, the non-US born population. And I'll tell you a personal story. My mother got breast cancer about 10 years ago, 12 years ago, and I knew she had latent TB, she's from Pakistan. She grew up there as did my dad. So, I made her go get tested, which she'd never been tested before.
And lo and behold, she had latent tuberculosis. And she's like, “I'm sure I got it on my last trip.” I'm like, “I'm sure you got it like 30 years ago, Mom. But that's okay.” And then to get her treated, to have under, explain to my mom why she needed to be treated, especially as she was going to be immunosuppressed.
It took a lot of conversations, and that's with my family members. So, you can imagine that we provide that education long-term. But yes, there, there are inequities. That is the population that we see tuberculosis in and it certainly makes sense because of the risk factors.
Srinivas: Yeah, it's very true. And when we're looking at a lot of the populations that are most likely to be infected, you mentioned Asian Americans. They have the highest risk in the US, right?
Srinivas: 32 times the likelihood of the average non-Hispanic, white population.
Ahmed: Right. Exactly. Yeah.
Srinivas: And then Hispanics and Latinos as well are elevated risk at nine times that of the average population.
Ahmed: So, if you look at absolute numbers, if you look at just number of cases, of course it's going to be more the Hispanic population. But if you look at like you're pointing out the case rates in terms of the pop, you know the number of cases per that population then Asian Americans, Indians, Pakistanis, Filipinos definitely are going to be the ones that most likely have tuberculosis.
Srinivas: And the hardest thing too, with a lot of these populations is oftentimes, as you mentioned, it's latent. They don't present as sick. And there's really no reason for them to be seeking medical care on the average population, or especially to be screened for this. So how do we overcome that notion, and make sure that we think about this when we're taking care of these populations every day?
Ahmed: Yes. And I wish I had a quick fix for that, but I will just say it's mostly going to be education again and again and again, and one-on-one. And so, I actually, when I see patients, I draw it out for them. I draw out, you've seen that, that picture, that diagram of infectious tuberculosis and the organisms are in the air and then they go into your lung.
So, I draw out those infectious organisms and put one dot in their lung and try to explain to them how the, there's a wall around that for latent tuberculosis. And then I say, and when it becomes disease, it breaks through this wall. So, I actually draw it out for them to explain to them. And as because we just, as we discussed most of the patients with tuberculosis or latent tuberculosis are going to actually be non-US born, often there's a language barrier. So, to do this, to explain this concept, using an interpreter is even more difficult, which is why I use the drawings as well. So, I explained to them, this is sleeping and then this breaks through.
And it's very hard to explain to people why if I look well, I feel well, my X-ray is normal, why do I need to take this medicine for a long, long time? It makes no sense. But then drawing it out and one patient at a time explaining it to them. I do think that education in general, as we tell, teach our medical colleagues all about latent tuberculosis even, they need to be educated because there's not much TB in the United States anymore.
People don't think about it. So even educating them I think helps and then they can further educate the patients. But yes, getting the word out there and explaining to them that it's not that we think that because you are non-US born, we want to identify you. It's because you're from an area that puts you at risk and we're trying to prevent future cases of disease.
Srinivas: And those are such important points when we're talking about the bulk of who really gets infected by TB. What are some of the other risk factors in the US population as to who people should also be looking at and thinking, should I test them for TB?
Ahmed: Yeah, so we definitely have historically looked at populations that either are more likely to get latent TB or more likely to progress to tuberculosis once they have latent TB. Those are the ones that we're attempting to screen. And historically, for example, patients with HIV. And in, in the early days of HIV when we didn't have great therapy, didn't have great control, TB was a big late, having latent TB was a big risk factor for progressing to TB. So, we did do a fair job of screening those patients. And fortunately, drugs are now available. It's a healthier population, and the risk of progressing to tuberculosis from latent TB isn't as high as it was, but that would be another population we would look at.
Additionally, of course, the homeless population, just because they're living in these settings and they're possibly getting exposed and then they're not having access to the healthcare system, as well. So, that would be another population we would look at. And then contacts, of course, you're always going to be doing contact investigation, in terms of screening for those patients.
Now we have gotten into the era of using biologics to treat a lot of patients, which also immunosuppresses them. So that's a lot of our screening that goes on. Adult or pediatric patients who are being placed on, for example, Humira need to be tested or that are about to undergo solid organ transplant evaluation.
We need them tested because once they're immunosuppressed, they're much more likely to progress to tuberculosis disease. So really the immunosuppressed population, homeless population, prisons, congregate settings such as that. And then, and then the contacts, the cases which are part of the contact investigation typically.
Srinivas: And so, we've been talking about it from really a public health standpoint and thinking about it for the general population, but when we take those patients into the hospital, it creates a whole new set of challenges. How do we overcome some of these issues?
As we make sure that we're still keeping in mind that we want to keep other patients safe, staff safe? And infection prevention protocols in place.
Ahmed: Yeah. So, in the adult world, I do think it's a little bit easier in the adult world than the pediatric world, just because everything gets more complicated in a children's hospital, right?
Because the family comes with the child. But in the adult world, I think again, communication, dialogue with the patient and education from the get-go. That this is the expectation for you to be discharged. Because we don't want to surprise them with the whole requirement for two to three sputums being negative on whatever type of test you're doing before they're discharged.
Explaining to them, of course, the isolation. Typically, by the time an adult is diagnosed, they get the contagiousness part, so they know that they're not going to have visitors. But I don't think they get that you're going to require some sputums to be negative unless you happen to live alone and can actually be in isolation by yourself.
Then the other complicating factor for the adult population is the ones that are homeless, right? So, explaining to them that they may be there a little bit longer, until something can be arranged for them so that they're not infecting those around them.
And so just communicating from the get-go. But you're right, it is isolating and I can't imagine going through that day after day, waiting for these [sputum] smears to come back, which take, can take 24 hours. And then the cultures which can take a little bit longer and the, and even the molecular test can complicate their stays.
Srinivas: You started touching on kind of some of the things that are needed before we can take people off isolation. Perhaps it would be helpful, because I do see, those of us in infectious disease, we see this a lot. But those who aren't an infectious disease, it might be helpful to review some of those protocols, what exactly is needed before we can take somebody off of isolation. And what does isolation include?
Ahmed: Yes. So, isolation in the hospital, and I'm going to talk generally, COVID definitely complicated and also simplified things for us. But in general, the isolation that you would need for tuberculosis is airborne isolation, which now that we've been through COVID and every, whether you're an ID or not, you learn, droplet versus airborne.
You learn that as well, the N95 versus the surgical mask. But it is airborne isolation, which means the patient's on negative pressure, everything has been taken out of the room. So, if the patient was there coughing, those organisms are removed from the room. And then if you go into that patient's room, ideally you would even have an ante-room where you can actually store your special masks, which are the N95 masks that you're fit tested for. And then you would wear those masks and go in so that you're protected from that airborne spread of that organism.
Now, because of COVID, we've all become very familiar with N95s. We're also very familiar with fit testing, which was an annual process for us. One thing that, good thing that's come out of COVID is we're all familiar with the N95s. We know what fit, why fit testing is important.
And so anyone going into the room would wear an N95. Now, a person that is visiting the patient would only wear - a non-healthcare worker - would only wear a regular surgical mask because they're not fit tested. And I'll go into the pediatrics complication of that.
Of course, if it's the spouse and they've been living with them, they're probably already exposed. And depending on what their latent TB infection status is, they may or may not need to wear a mask. And so, with this airborne isolation means you are also, in the adult world, you don't allow visitors unless they have to come. In the pediatric world, of course the family has to be there.
So, the patient does get isolated because they don't want to expose their friend who may not have been exposed yet. They don't want to expose that person that may come in to visit, until they're cleared from isolation. And cleared from isolation, so typically, adults who have tuberculosis, most of them, the vast majority are going to have pulmonary disease.
So, if it's pulmonary disease it's when they're in isolation. If they happen to have extrapulmonary disease without any pulmonary involvement, say TB meningitis, then they wouldn't necessarily be on isolation, but they're mostly going to have pulmonary disease. And so, in order to remove them from isolation, we have to make sure that what they're coughing up does not have the mycobacteria in it.
And the best way to do that is with sputums, whether they're the spontaneous sputums or induced sputums, and then looking at the smear. And it, the smear is basically like the gram stain equivalent for mycobacteria. And you're looking under a microscope and it tells you that if you're, if your smear is positive, it tells you have a certain burden or a load of tuberculosis, which would imply contagiousness.
And we would like them to have three sputums while they're in the hospital, in order to take them off of isolation in the hospital, three sputums that are smear negative.
Srinivas: And you were talking about this, or you touched on this briefly when we were talking about isolation. But the additional challenges with pediatric population, especially when they're coming into the hospital and need to be isolated.
Tell us more about those challenges.
Ahmed: Yeah, so a child coming in with tuberculosis, first of all, it's an age spectrum, so most children who are under 10 with tuberculosis, first of all, they're also just like adults, most likely will have pulmonary disease. But most kids who are under ten, under eight years of age who have pulmonary disease, don't have the typical cavitary disease that adults have.
And that's something I try to teach the residents and the students too, because they're looking for the cavities. What they're going to actually have is more hilar adenopathy, because the idea is that the child gets infected, it is parenchymal and then it drains into the nodes and that's where it enlarges and becomes hilar adenopathy.
So, they don't have the bacillary load that adults do. They don't have cavities teeming with mycobacteria. So, because of that and because of not having a strong cough, lack of cough, and then paucibacillary disease, they're not contagious like adults are. At least the kids that are younger.
And so, the isolation is not focused on them, but on the people around them. Because if those kids have tuberculosis, you know we say they're like sentinel chickens, right? If a child has tuberculosis, some adult around them has tuberculosis and gave it to them. And so, what we're doing is we're saying, let's put this child in isolation, not because the child is contagious, but because whoever's accompanying the child might have given it to them and therefore now they're contagious. Put the child in isolation, meaning only two visitors, which is typically the parents, the two visitors.
And then we, we the hospital, will pay to get chest X-rays on those parents to make sure they don't have active disease. And we also used to do a skin test. Now we do QuantiFERON on them. Because that lets us know, first of all, it's a little bit of a source investigation to see if that's how they got it.
And it's also preventing spread by making sure that those two visitors aren't walking around the hospital without a mask. And until they're tested, until the X-ray is done, we do say that they need to mask outside the room. Which during COVID wasn't an issue, of course, but now that we're not masking anymore, that's what we require.
If a child is an adolescent and they have more adult type disease, they do have cavitary disease, then they are contagious and we would isolate them just like we would for an adult. And then require them to also give sputums until they're smear negative. But what happens is the dynamics, right?
So, you tell the resident and the medical student, "only these two visitors" and they think, "oh, two visitors." So, then making sure you keep reeducating, it's the same two visitors that we've already tested because we're not doing X-rays on everybody. Or getting the fam, the rest of the family to the health department for testing for exposure or as a source case.
And that's a big challenge as well.
Srinivas: The, with the two visitors. So, if it is the two parents, say, that are coming in and seeing the main patient and staying with the main patient, especially because we're dealing with a lot of immigrants, like we talked about before. What, how easy has it been to really convince them to get the X-ray to get the additional testing? Since they don't view themselves as a patient either?
Ahmed: So that hasn't really actually been a major issue. We do explain it, that we're making sure that they are not contagious and then, most parents, no matter what their backgrounds, don't want to have been the cause that their child is sick. And so, they're willing to actually go ahead and get tested because they want to make sure that they don't have it as well.
So, my very first childhood patient here with tuberculosis was actually from a Hmong family. And convincing them the importance of getting everybody tested around them. Even though we knew that the child had likely gotten it from the grandmother. Even that, sort of explaining that was a challenge to them. But then saying, okay, the grandmother's got the disease. Why do you need to check me, the father? Like you said, what I explained to them. But that hasn't been as much of an issue as trying to explain to them that your child needs this extra test or this gastric aspirate to figure out what's going on and why, when they're tied more into spiritual care.
Srinivas: Oh, that makes sense. And then in a family like this one where it was the grandparent and the, but the grandparent might not be one of the two parents in the room, do you still do more of that investigation or is that kind of when you hand it over to public health and say, “Hey, can you help us figure it out?”
The parents are both negative. So, we don't think they're the exposure. Is that kind of where they take over and start to look at other contacts?
Ahmed: So, once we've, we typically, the parents or two guardians get the chest X-ray. So, we've already evaluated them and we definitely pull the health department in.
That's another piece of education that I feel like is our job, is to make sure that the teams understand, the inpatient teams understand, that you got to tie in public health early on and they'd rather know early on. And pre-COVID, our health department would actually come in and provide the education, adult or pediatric patient, to the family to say, "This is how we're going to be involved. This is not because you've done anything wrong, but this is just to assure you get the medicines. We'll give you the medicines free. We'll be coming to your home." So that they're forewarned, et cetera. But they do take over the investigation of the rest of the family.
And part of it, in the adult world, we're doing contact investigation, right? In the adult world because the adult is contagious. We're making sure they didn't infect anybody else. In the pediatric world, we're also doing a source investigation. So, we actually just recently hospitalized a young lady, 10-year-old who had cavitary disease, which is very unusual for a 10-year-old.
And said, okay, can we start looking at the home? Because we know someone around her gave her tuberculosis. And sure enough, we identified the uncle as having disease. But more importantly now we've taken him out of the home so that he can't infect other people. But they will take over and they're our great partners in doing that.
And then they take over the treatment for the child as well, once the child is discharged, just because it's going to be directly observed therapy.
Srinivas: And are there anxieties surrounding directly observed therapy?
How do you overcome some of those challenges?
Ahmed: Yeah, so preparing them ahead of time. Definitely. And this is, again, I think our role in the hospital is preparing them that there will be directly observed therapy and explaining to them why. You want to make sure the drug gets to where it needs to get. It's going to be free medication.
And then, you don't ever want to get to the point to say, this is the tuberculosis law. You don't want to scare anybody off. You want to make sure they understand this is more to support them. And thank goodness for technology now, right? So, we can do video directly observed therapy, which has made it, isn't that, it makes it so much nicer.
We have had though, health department will be willing to go meet people outside of their home if people are worried about them coming to their home. For children at least they'll go out to their daycares, and they'll go out to the schools. But I've had the health department nurses meet them at the mosque, for example, just to make sure that they are not in their home where people can, they don't want other people to see them.
Srinivas: You've seen so many different stories and honestly have tailored care to each person's custom need, which is so important. Of all of the things that you have seen over the years and all the different types of tailoring you've had to do, what do you think would be the most important lesson you'd want to impart to our listeners today?
Ahmed: So, I think the most important lesson, especially when it comes to infection prevention and then treatment, is the education piece of it, for us. And it's difficult, especially when there's a language barrier. And I know that, I know it takes twice as long, when there's a language barrier. And explaining to the family takes time. But it's so important to do that because they really, the concept of latent TB versus TB disease is a difficult one, even in the same language.
So, I guess the message I would deliver is as providers, I think that this is a disease where educating the family again and again about, and stepping into their role and stepping into their, mindset and seeing what is it that they're not understanding?
It's hard for people to understand why they need treatment when they look well, they feel well. And it's hard for people to understand something that may happen years later, as opposed to next week. So, explaining to them the pathogenesis of latent TB, even with pictures, I think is important. It's a hard disease, but fortunately it's a disease that responds to therapy beautifully and we have some time with it, typically.
Srinivas: That's the best wrap up message I could think of. Thank you so much for your time and for being here to talk about TB in our current world today.
Ahmed: Thank you so much. It was fun.
Stories of Care is a publication of the AMA and CDC's Project Firstline. Project Firstline is a national infection control training collaborative, working to provide all health care professionals with the foundational infection control knowledge they need and deserve to protect themselves, their patients, their coworkers, and their communities. For more information, trainings and other infection control resources, visit CDC.gov/projectfirstline and AMAfirstline.org.
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