Thinking Beyond the Diagnosis: PTs and Infectious Disease Response - A Q&A With Michel Landry, BScPT, PhD
Zika virus is back in the news, as new cases have now been reported in Texas, according to the Centers for Disease Control and Prevention (CDC), which estimates that 1 in 10 women who contracted Zika while pregnant had babies with birth defects.
What is physical therapy's potential role in responding to Zika virus and other infectious disease outbreaks? APTA PT in Motion News invited Michel D. Landry, BScPT, PhD, to discuss this topic. Landry was the lead author of a "Point of View" article published in the March 2017 issue of Physical Therapy (PTJ) titled "Zika Virus (ZIKV), Global Public Health, Disability, and Rehabilitation: Connecting the Dots…." The article already has begun generating discussion in the academic community.
Landry is a professor and chief of the Doctor of Physical Therapy Division in the Department of Orthopaedic Surgery at Duke University School of Medicine and is an affiliate in the Duke Global Health Institute (DGHI). For over 20 years, Landry has worked with international humanitarian aid and development agencies in Central America, Eastern Europe, Nepal, and Haiti. He worked as a disability consultant for the Nepal Office of the World Health Organization (WHO) after the country's 2015 earthquake and within WHO's Emergency Medical Teams in Geneva, Switzerland.
This interview has been lightly edited for clarity and brevity.
PT in Motion News (PTMN):
Thanks for taking the time to discuss your recent PTJ article about Zika and the role of rehabilitation.
Michel Landry (ML):
I'm really glad you want to talk about it. It's interesting, because, up to this point, a lot of what we talk about in physical therapy is our role inside noncommunicable and chronic disease management. And while that's absolutely true, it often feels to me like a "zero-sum game." Now [physical therapists (PTs)] do more of the noncommunicable [and chronic] diseases … but we have a role in infectious disease outbreaks. That's why we wrote the paper.
In the article, you're arguing that, at least in the context of Zika, the public health community needs to give equal weight to prevention and rehabilitation. Is that correct?
Yes. Much of the discourse that happens around infectious disease is: "We need to find a cure." And there's no human in the world that would say that would be incorrect. But it does feel … in the literature and mass media [as if it's] positioned as an either/or conversation, [that] we should forget about doing all the other stuff and addressing issues around disability (in the case of Zika, around those born with microcephaly) and plow all of our efforts into curbing the infection. What we're trying to say in the article is, "Yes, we need to focus on vaccines, but we can't forget about those who have a Zika-acquired disease." Among adults, that is often expressed in Guillain-Barré syndrome, and in infants it is expressed oftentimes as microcephaly.
We need to be as concerned with those who have survived the acquiring of the infection all the way through to looking at vaccine development for curbing the overall epidemiology.
That discussion is not terribly new. We've made the same arguments [about the importance of rehabilitation] as it relates to disaster response. I'm a PT, but I'm also 20 years working in disaster response. I work with WHO emergency medical teams. But the same thing holds true for that scenario—you have a disaster, you have a conflict, and we're able to preserve lives fairly easily now. It's quick action, disaster preparedness, easy access to antibiotics … . So you save people's lives. But they also live with spinal cord injuries, massive burns, amputations. We have to be as concerned with the long-term consequences and quality of life among people who survive war or sudden-onset disasters as we are with the kids and the adults who survived an infection. And that's where the overlap between rehabilitation, global public health, and infectious disease has to start to advance our consciousness.
I think we're making good headway in disaster response, but we're not quite there yet in terms of infectious disease parameters. A good [physical therapist] friend of mine from the UK treated a lot of the Ebola victims and, again, many of them survived. But they survived with a fairly important level of disability. We owe it, I believe, morally and ethically, to those survivors to gain [them] some sort of quality of life.
Getting back to the different manifestations of Zika, what are the top diseases and disorders that infants and children are showing up with after Zika?
Well, among infants, the manifestation is mostly microcephaly, which is not a diagnosis or condition but rather a collection of symptoms related to an underdeveloped cranium and neurologic tissues. The virus impacts the development of nervous tissue, in this case the brain. You will see all kinds of other related impairments. These kids often have significant developmental delay, some of them are blind, some of them would not be able to speak, and most will have musculoskeletal functional problems. Most of these [conditions], though, are treatable and can be improved with rehabilitation.
I've been trying to advance the term "rehabilitation-sensitive," meaning that the introduction of rehabilitation can improve outcomes. Stroke is an excellent example of that. When you have a stroke, if you don't get rehab … it's going to be very challenging. But with early intervention, with appropriate intervention in the long term, you actually could do quite well.
Also, not everyone who is infected by a carrier mosquito will develop the symptoms of Zika. Just because you're a woman, and you're from Brazil, and you get diagnosed with Zika doesn't mean you're going to have a child with microcephaly. And a lot of the diagnostic tools in low- and middle-income countries don't allow you to do in vitro diagnostics. One of the really concerning points we saw in the literature, and I referred to it in that paper, [was] that people [were saying] we need to start aborting these fetuses because the woman was diagnosed with Zika in a blood sample. Even among those who are born with microcephaly, there's a huge [range of severity of outcomes]. Some of [the infants] are very intensely affected, but many of them have very [low levels] of impairment. You can't predict outcomes until birth. We felt that even invoking the UN Convention on the Rights of Persons with Disabilities [UNCRPD], you just can't say, "Because the child might have microcephaly, we should abort the fetus." Doing that, I think, is fairly regressive from a UNCRPD perspective.
Do you think this is the tip of the iceberg, that we will find other effects in the long term?
Yes, we have no idea what the long-term effect [of Zika virus] is going to be. It's sort of like when people were exposed to Agent Orange during Vietnam—the symptoms only became clear much later on. Same thing with 9-11 survivors with regards to respiratory issues. So, you're quite right, we don't know, but I don't think that should have an impact on how we respond. I think it's incumbent upon [physical therapists] in 2017 to think, "how might we best support, encourage, integrate [the person]?" as opposed to turning a blind eye.
In an email conversation, you talked about how PTs can help change the public health conversation. You said PTs need to "learn a new language" and start thinking more about population health as opposed to the individual. Can you elaborate on that?
Here seems to be the point. Oftentimes we in [physical therapy]—and it's true in most health disciplines—train our students how we were trained, primarily to treat a [specific] patient with a [particular] condition. So patient X walks in with this profile, and here are the 3 different interventions we are going to [consider]. If you will, it's the N of 1. From a global public health perspective, we need to reject that equation and start thinking of N="community" or "population." We need to start thinking of what populations need, especially as it relates to infectious disease outbreaks.
As an example, it wasn't as though during Ebola people said, "Hey, we should involve rehabilitation." What happened is—again, people were surviving—they were placed in quarantined areas of the ICU, and being placed there they started to demonstrate clear functional decline. PTs [who were treating people who had returned from the affected areas], particularly in the United Kingdom, in some of the hospitals started to discuss and present the case that, "Listen, yes, it's an infectious disease, but put that aside for a minute. Think about the functional decline of this population [that's] been exposed to Ebola." PTs started to contextualize that in the future people [with infectious diseases] are likely going to survive, and we have to think about how they're going to integrate into their own communities. So the population health discussion and the "new language" is [that] we need to start thinking beyond the diagnosis and beyond the jargon, and talking about a population-based community reintegration model [among nontraditional populations].
We [physical therapists] might understand each other, but oftentimes policy makers [and] health systems have no idea what we're talking about. So we need to develop new language that would fit within those larger political discussions. That is one of the tangible ways, I think, we as a community of PTs can advance and integrate, and have an impact in fields we traditionally have not been involved in. And that would be infectious disease. Because, seriously, if you said to 100 PT students, "You have a role in infectious disease," they would say, "What are you talking about?" I think in 10, 15 years, we're going to [say], "Of course we have a role in all of the infectious and noncommunicable diseases."
Do you think that population health perspective may not make sense to students, when you're teaching about patient-centered care and also the emerging discussions about precision health?
It's a brilliant point, because we're all talking about this personalized medicine and personalized rehab, and doing a DNA test and strategically targeting individuals. I think we need to create a little bit of nuance. And we have to think that it's not just either/or, it's both/and. It has to be a combined effort. I would like to see us in the future think that the continuum [of health care] begins at the cellular level and ends in the population. And we all have a role to play in that trajectory. Right now, I don't believe we have enough effort and focus and interest in that population-level end of the continuum, [although] a lot of PTs have really great interests and skills, and are really targeting that early phase. We have to elongate that conversation.
To give you an example, let's pretend we're at CSM. Let's say you have a presentation on … a topic that's very specific and somewhat obscure—and right next to it you have a presentation on population health. If you had 100 participants, and if you took the average PT, you'd have 98 of them wanting to go to the [first presentation], and maybe 2 in the population health [presentation]. It's not as though anybody is wrong; I just believe we need to put more fuel into that population and community health policy conversation. When you talk public health among PTs, they often make the link directly [to community-based exercise programs]—but it's much more complicated than that.
Yes, when you hear "public health" and "physical therapy" in the same sentence, it's often about obesity or some other chronic disease. Can you think of any strategies for "boots on the ground" PTs to use to educate employers or physician colleagues about the importance of physical therapy in disaster response and infectious disease?
I think there are [a few] ways to look at it. One of them is financial. In an infectious disease model or a disaster scenario, or even in a plain old population perspective, if we're ready to invest in that early phase of life preservation and intensive care units, and all of the things that are required to preserve life, it seems to me counterintuitive not to invest in a continuum, which will at least allow that person who's survived [to gain] some quality of life. Quality of life also means [enabling a person to] go back into employment, take care of their family. It makes no sense to me to invest high resources into the early phase of [treating] an individual or population without investing in interventions like rehab that amplify those early successes and facilitate longer-term outcomes.
Morally, ethically, I think [rehabilitation in a disaster scenario] is also something we might [look at through] a different lens. [We] preserve life, but we can't just stop there. Can we really just leave that person to fend for themselves in communities that are often hostile to persons with disabilities? In my mind, we just cannot and must not think this would be morally acceptable. It affects the whole community. We should not look at it as an individual going back to live independently or by themselves. [The patients] often, especially in low- and middle-income countries, go back to live among their family and community. If we send them back into their previous environment with poor function, what often happens is that the community has to somehow take care of that person, or there is a feeling that [the community] must care for them. And what that means, usually, is that [the caregiver] can't be working to earn money for the family. The next stage is you start to propel [individuals and communities] into poverty.
So there is a moral/ethical reason to say, yes, in an infectious disease you need the early emergency medical interventions, but in order for them to go back and be part of their community they need to have some sort of rehab. If you don't do it, basically you're risking and promulgating further poverty in an area that already knows poverty very well. And that is exactly the case in places like Brazil.
The third [argument] has to do with just using an evidence-based perspective. If a child were born here, in Durham (NC) or in Washington, DC, with microcephaly, what kind of care would we provide that child here? And if we were to say we would provide some sort of continuum [of care because] there is a social welfare safety net for that child and that family—should we not seek to recreate that same scenario? Maybe at different amplitudes and at different levels, but should we not seek to do that [for people] in low and middle-income countries?
If there is something that is known to facilitate and improve function, should we not, as a global community, engage in that action, whether they are born in Washington, DC, or in São Paulo?
What is the next step that needs to be taken to get this conversation going among the public health community, the broader medical community, the physical therapy community?
Here's what I'd like to see, and it's actually kind of happening. The paper that [we wrote] has no [primary] data. We didn't collect any data; it's an editorial. And I have had more requests for that article than many of my other publications I've ever written. So it is striking a chord because people outside of the physical therapy world are recognizing that public health and infectious disease actually means people are now likely to survive. [The global public health community] needs to think about what that long term is going to be. The medical community, the nursing community, don't oftentimes know what that [rehab] stage is. They know it's important, but they're not really sure what to do about it.
I'll give you a quick example, in Nepal [after the earthquake]. There was some unclarity among the WHO [emergency] deployment teams regarding people with spinal cord injuries [SCI] who had survived, where they were, how many there were, etc. Many SCI survivors were in the acute medical setting and were medically stabilized, but because of uncertainty about the community resources for these people, they remained in the acute setting and were blocking beds for other trauma victims. [The medical system] called in rehab providers and said, "Listen, you need to get in here and help to facilitate discharge. We don't know how to deal with this situation." Previously they would have just sent those patients home. So there is now an acknowledgment that rehab has a role to play, although they don't often know what that role is. It's incumbent upon us to start to articulate what that role is, and what the effects would be in austere settings and environments. But we can't make that articulation or make that argument as we have been for the last 100 years, which is about [the clinician-patient relationship]. We have to look at from a multidisciplinary and public health perspective. We in PT [say] that we do that, but in practice I don't know that we do it that well.
On a global scene—and that's why I'm saying we need to learn a new language—we need to be able to communicate with people who often are totally unclear why we should be having rehab, or what rehab is, especially in emergency response. It's 2017—we have been around for [almost] 100 years. [Rehab is] still not very well perceived or very well defined. We need to articulate that rehab is not just about chronic disease, but that it has a role all across the continuum, including in infectious disease.
Not to scare anybody, but we all have this assumption—because we all watch too much television—that when there's some sort of nuclear attack or a spill, all of a sudden there are all these emergency teams from some military base who arrive with gas masks and other things. But actually that doesn't really exist in life.
So we need to be prepared not for what has happened in the past but what might be occurring in the future. You see now in Syria, there actually has been [evidence of] gas attacks. What is the PT role in that [scenario]? Have we ever talked about it? Have we ever decided what it might be? I don't want to leave it up to chance for maybe a physician who's deployed saying, maybe after a gas attack, "This sort of looks like a burn, maybe we should include a rehabilitation provider." We need to be way ahead of the curve, and not just responding to it.
How difficult will it be to engage physicians in thinking about this as a multidisciplinary effort? There are recent reports, for example, of physicians not always following CDC guidance to ensure that infants exposed to Zika receive brain imaging, even if microcephaly is not present at birth.
How do we instill change? I think it's difficult. Maybe if we start using the language of physicians and emergency response teams, as an example. But we also have to be present at the right place at the right time. We need to have strong advocates strategically placed along the trajectory. Our health system in the United States is extremely disjointed, at best. So it's not as if those physicians are trying to do harm. Everybody [in the health care system] is doing what they think is the right thing, but we've never taught people how to work together. And so we've never actually integrated [how] these multidisciplinary teams [need] to be thinking and working differently [in practice].
I think we need to do a better job [of] professionalizing how we look at advocacy [in global health]. There are a lot of areas we could probably improve. Sometimes it's easier to make changes in a global world than in our own backyard. Maybe it's time to hold a special session about our role in infectious disease and articulate some guidelines. The only way to encourage people to change, in many ways, is if there's an approved guideline or recognized standard. Maybe it's time to sit down and say, "What is our role the next time we see another Ebola or another Zika?" Or, heaven forbid, when it happens in our backyard. Are we ready to respond? The answer, truly, is no. We are not ready, in the United States, for a major outbreak on the order of what happened with Zika or Ebola.
To switch gears, aside from looking at long-term physical disabilities that often result from Zika, what are your thoughts on the role of early intervention and its impact on disability outcomes?
This is a relationship that's very stable in the literature. Early intervention mediates the outcomes in the long term. With Guillain-Barré as an example, in the early stages, if there are no passive range-of-motion exercises, and [if there is no education to help] the person understand what the disease state is, the outcomes are often poor. Early intervention pays off dividends in the long term.
Same thing holds for early intervention for children. If you have [a child] born with microcephaly, oftentimes they're overprotected by the parents. That's actually the last thing you want to do in many cases. It's kind of counterintuitive, but you need to be intervening (and I'm not a pediatric specialist) early in terms of identifying the specific impairments. If it's sensory deprivation, you're going to start thinking about how you're going to stimulate sensory [systems]. The kids we're talking about [after Zika infection] are now about a year-and-a-half, or 2 [years old]. [In Brazil] there is very little capacity among these rehab providers to be doing these newer evidence-based approaches. [The children] likely are not getting that care. And their outcomes are going to be poorer [than if they had received early intervention]; there's no doubt about that.
Maybe one thing I haven't yet said: What we need to do as emergency responders right from the start is think about capacity-building in the local context. Had we, for instance, as rehab providers, been heavily involved in the Zika outbreak, we could have been there at the forefront, alongside the emergency teams, addressing the early stages [of medical and rehab interventions] but also building capacity among the other providers, so that when we depart we leave something behind, some level of feasible infrastructure. We can't recreate a Shepherd Center in São Paulo [for people with SCI], but we can create better capacity among those [providers and institutions] who are there.
It has nothing to do with the existing quality of care with [the local] providers, but they have never really had to deal with this kind of context before. A quick story; I'll never forget this one: I was in Haiti within a couple of days after the earthquake [in 2010]. We were admitting patients with spinal cord injury in a small, make-shift, barracks-style facility. At the end of 2 days, we admitted 18 patients with spinal cord injuries. It was a brutal 48 hours. At the end of the second day, we were sitting and having drinks, and 1 of the Haitian nurses said to me something I'll never forget. She said, "What kind of earthquake did you have in Canada that you have all this experience with spinal cord injury?" It occurred to me at that moment that she had about 2 days of spinal cord experience, but we in North America have been doing spinal cord rehab for over 60 years. So right away it demonstrates in much of the lower and middle-income countries, they never had to manage some of these complex disabilities and conditions. You know, so it's incumbent upon us to say, "It's not that they don't have the capacity, it's that they've never been exposed and have never had the training." Part of our MO [as emergency aid workers] has to be to deploy, be involved, and capacity-build right away.
Is there anything we can do to better prepare parents or potential parents of children affected by Zika, based on what we know about it?
You know, I think so. We've never had any conversation in the rehabilitation community about Zika. I don't recall anything major happening. We don't really have good guidelines. We often borrow from other pediatric conditions and say, do this, but despite all the events, because it had such a low impact in the United States relative to other countries, we didn't go to the next step. Had all of this happened in the US, we probably would have said we need to develop guidelines, we need to do all these different things. Could we create more specific emergency guidelines on rehab for infectious disease? One hundred percent, absolutely. I'm not sure why we're not doing this. Maybe we need a disaster committee within APTA that is going to start thinking about what our role might be. We need a call to action, I think, and one that takes the conversation out of small groups of individuals and into the larger national strategic conversation.