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Long COVID Syndrome and Importance of Physiatry-le ...
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Good afternoon, thanks for joining us today. My name is Dr. John-Michael Berrada. I am an assistant professor in the Department of Physical Medicine and Rehabilitation at the University of North Carolina in Chapel Hill. I'm joined today by two great faculty members, Dr. Benjamin Abramov from University of Pennsylvania and Dr. Monica Verdusco-Gutierrez from University of Texas Health in San Antonio. Today we're going to speak with you about long COVID syndrome and the importance of physiatry-led recovery programs. I'll speak first and then pass it off to Dr. Abramov and Dr. Verdusco-Gutierrez at the end. And hopefully we'll have a little time at the end also to answer questions that you may have, but feel free to put them in the chat throughout the presentation today. The objectives of our symposium will include describing key epidemiology symptoms and proposed etiologies for long COVID, reviewing the PM&R-led team approach for long COVID care, and discussing evaluation and treatment of some of the most prevalent long COVID symptoms. And I'll start by speaking on a background of long COVID. As far as disclosures, I have received honorarium for educational lectures on post-COVID conditions from the institutes listed. So let's start with a discussion briefly of terminology, and that is post-COVID conditions. This is an umbrella term for conditions characterized by varied persistent symptoms and health effects after resolution of the initial infection. And these conditions could last for weeks, months, or perhaps even longer. In some cases now in our post-COVID clinic, we're seeing cases that have been lasting for more than a year. Post-COVID conditions are characterized by a lack of return to the usual state of health following the COVID illness. And they're referred to also by a wide range of names. And it seems like even since we submitted the proposal for this symposium, the preferred names have changed a couple of times. And they include PASC, or post-acute sequelae of SARS-CoV-2 infection, long COVID, post-acute COVID, chronic COVID, and post-COVID syndrome. So it's important to understand the interplay between acute and post-acute COVID. Post-acute COVID is a period that typically lasts no longer than four weeks and is often associated with positive testing, such as PCR testing. Post-acute COVID occurs in a later time frame, as indicated on the right side of this diagram, and is not necessarily associated with positive testing. People with post-acute COVID or a post-COVID condition are not infectious or contagious. Standardized definitions for post-COVID conditions are still being developed. But I would suggest that it generally must include a prior COVID-19 illness. Most of the time that would be documented, but not always. And there must be some lingering symptoms or health effects attributable to the prior infection. The timeline for the late sequelae, or these lingering symptoms, can be variable. And that is still a point of discussion. The CDC and NIH have suggested that four weeks may be a time frame for the late sequelae to start, whereas the National Institute for Health and Care Excellence in the UK suggests 12 weeks. Post-COVID conditions can be difficult to delineate because there's a lot of overlap in symptoms. So as seen here in the diagram on the right, PASC or long COVID can overlap with a variety of hospital-acquired conditions or hospital complications, post-ICU syndrome, or new or chronic medical conditions, or perhaps recurring medical conditions, which seem to have worsened or at least are not improving in the post-COVID period. So it can be really tough to tease out, particularly in these long COVID clinics, what is a symptom and what are health effects directly related to COVID and what might just be a coincidental health issue. Just like acute COVID, which can affect a variety of different organ systems, post-COVID symptoms can also touch on organs throughout the body and also actually the mind, too, with cognitive effects and mental health concerns. As you can see pictured here, a variety of organ systems can be involved with persisting health problems or symptoms after COVID. In the experience of our clinic, we do find that fatigue, respiratory discomfort, which can include chest pain, shortness of breath, increased sputum production, brain fog, which might be memory or attention impairments, and also headaches are the most common symptoms, although we commonly see dozens of symptoms and the variety can be quite stunning. I'd like to go through some of the literature that's available to discuss the frequency of some of these symptoms, and I'd like to just briefly walk you through the literature, some of the key publications that have been released over the past year, so you can understand how quickly the concept has evolved over the past year. One of the first publications that was distributed, which showed persisting symptoms, was out of Rome, out of Italy by Carfi. This was published in August 2020, and this study showed that across about 180 patients who were previously hospitalized, a number of them had persisting symptoms at 60-day follow-up. This included fatigue in over half of them, also dyspnea, joint pains, and chest pains. One of the first six-month studies came out of Wuhan, China. This was among about 1,700 previously hospitalized patients, and this study also demonstrated a lot of ongoing symptoms, including fatigue and muscle weakness and sleep difficulties. Actually, in this study, at six months, there were about 75% of people who did endorse at least one symptom that was ongoing related to the prior COVID infection. This same cohort was rechecked at a year from Wuhan, and while the number of participants dropped somewhat from about 1,700 to 1,200, it was still a pretty good sample size, and it showed that there are still significant ongoing symptoms at a year out for this previously hospitalized population, including fatigue and muscle weakness in 20% and sleep difficulties in 17%. About half still had at least one symptom that was persisting. This graph shows the change in symptoms in this Chinese cohort between six months and 12 months after the initial illness, and you can see that many of the bars go down between six and 12 months, including any symptom, muscle fatigue, sleep difficulties, et cetera. But interestingly, of note, anxiety or depression does have a slight increase at 12 months compared to six months, so the incidence of mental health concerns may rise with time, particularly in people who have these persisting symptoms. One of the earliest cohorts in the United States came out of Washington State, and this showed that across close to 180 patients, of which they were mixed between hospitalized and non-hospitalized, there were about a third of people who had persisting symptoms between three to nine months, and the symptoms are listed on the bottom of the screen, but you can see, again, there are a lot of the same ones that I've mentioned earlier, fatigue, headache, dyspnea, and others. Then there were some studies also that utilized big data to evaluate for persisting health effects or symptoms after COVID. This one was an EHR survey of over 5 million Veterans Health Administration users, and it really examined a number of health implications between 30 days and six months after the COVID illness. This showed that beyond 30 days, people who had COVID still experienced increased risk of death, increased utilization of healthcare, including increased office visits with doctors and increased medication usage. There were also increased wide range of diagnoses, which I want to share with you here on this slide. If I could draw your attention to the right-hand column, I think this is most interesting from this study, with the different color bars, the green, the orange, and the purple. The bars indicate the level of care that the patient needed during their initial illness, with purple indicating that the patient needed ICU-level care, orange was hospitalized but not ICU, and the green is positive, but they were able to remain in the community. What this shows is that people who have more severe illness, like the ones that had to be admitted to the ICU, seemed to, across almost all of the symptoms or health effects listed, have an increased incidence or excess burden of these syndromes. There are also a number of neuropsychiatric symptoms and defects. This retrospective study across 81 million electronic health records identified close to a quarter million people who had COVID. It noted that within the six months after COVID diagnosis, there were increased both new and recurring diagnoses of anxiety disorders, mood disorders, substance use disorders, and insomnia. Pulling it all together, I would suggest to you that current data shows that the risk for post-COVID conditions is highest in people who are hospitalized, who needed ICU-level care, who have medical comorbidities, and based on referral patterns, also people who are female are at a higher risk. This means that across the United States, given the high caseloads, looking at potential emergencies, of 10 to 30 percent of COVID-19 survivors experiencing persisting symptoms or health effects, there could be 4 to 12 million people in the country who have had or continue to experience lingering effects of COVID. AAPMNR has really championed physiatrists as being a core member of the team to care for people with post-COVID conditions or PASC. They have released a PASC dashboard, which is available on the AAPMNR website, which is a really innovative way to estimate the PASC cases. You can go on there, and it feeds in data from the actual COVID illness caseloads, and based on some estimates that you can input on the left side of the screen, it will suggest to you how many PASC cases may be out there in your state or even down to your county level. In my last couple minutes, I just want to talk about some possible mechanisms for long COVID. There is still a lot that's unknown, but we do have a good understanding that SARS-CoV-2 seems to enter cells through the ACE2 receptors, and once it's internalized in a variety of organs, it undergoes replication and maturation, oftentimes causing inflammatory and immune responses. ACE receptors are expressed throughout the body, such as pictured on the right side of the screen. There are some proposed mechanisms for post-COVID conditions, and it's important to say that in one particular person, causes may be multifactorial, so there could be multiple things going on, and there is still a lot of research to be done to determine the exact causes, but some theories as far as causes for post-COVID conditions include end organ damage that might be sustained during the acute illness, remnants of the viral particles that might contribute to irritability or inflammation throughout organs in the body, autoimmune phenomenon in which the immune cells are stimulated in such a way during the acute infection that they stay revved up in the post-acute period, and also the same with inflammation. There is a cytokine released oftentimes during acute COVID, and it's thought that these cytokines could be activated and cause persisting body damage. I want to step through just a couple of the most common types of symptoms and some possible factors. With regards to fatigue, which is probably the most common issue that we see in our clinic, there might be hypometabolism or increased neuroinflammation leading to central causes of fatigue. There may be inflammation, damage, and atrophy of muscle fibers, and there are also negative psychosocial factors. For respiratory sequelae, we do know that in more severe COVID-19 cases, which is primarily a respiratory virus, there can be endothelial disruption, fibrosis, oftentimes mediated by IL-6, and pulmonary venous thromboembolism, and so these can cause some permanent lung damage. However, for the majority of people that we see in our clinic, they still have persisting breathing difficulties but might have a normal workup with imaging and pulmonary function testing, and they may have had even a more mild initial illness. There are some suggestions that hypoventilation or perhaps even hyperventilation could contribute to dyspnea, muscular weakness, and paroxysmal vocal cord motion. And just to wrap up, for cardiac sequelae, ACE2 receptors are also highly expressed in the myocardium, potentially leading to a source of myocardial inflammation resulting in fibrosis, and also microthrombosis, small clotting could result. Dysautonomia is a common issue as well, and we'll talk about that a little bit later. And this may be related to the ACE2 receptor being expressed on neurons. So that's where I'll leave it now. I'll pass it over to Dr. Abramoff from University of Pennsylvania. Thank you. Give me one second, I'll share my screen. Thanks, John. So I'm gonna talk about a survey that we did looking at kind of the practices of physiatry and other multidisciplinary clinics focused on the treatment of individuals with long COVID or PASC that we did over the early part of the spring into the summer. So we received responses from 46 different clinics, and looking at these clinics, the majority were homed in physical medicine and rehabilitation, although there was a good range of clinics with some in pulmonology and internal medicine, and then a spattering of other specialties as well. And in terms of just the question of behavioral health needs, most of the clinics referred to directly to behavioral health for therapy and counseling. A smaller portion of the clinics directly managed as part of their post-COVID clinic, and then there was also some that would just return back to the PCPs for ongoing longitudinal management, and that's what we do here at Penn, knowing that we may not have that long-term relationship with the patients. We work closely with the PCPs to help arrange that psychological follow-up. What types of resources did clinic provide? So 45% of clinics provided some sort of publicly available resource. 23% were focused on patient education, where this is exercising, rehabilitation strategies, social support groups. 65% had websites that they referred patients to, such as Survivor Corps, which is a patient advocacy group, government resources, and then 12% had specific patient information packets that they provided to the patients. Most of the interdisciplinary past clinics recruited patients for research studies. Most clinics were new to post-COVID, so prior to COVID, there are some critical illness clinics, some post-sepsis clinics, but most of these clinics around the country sprouted spontaneously in the wake of long-term COVID symptoms. Most clinics do provide information and fill out disability paperwork, although this is something that's commonly reported as a challenge for clinics, how to address this, given that there's no clear diagnostic criteria for PASC that can be widely and objectively used for patients. And then most clinics did not house in-house support groups, although a substantial minority did have some sort of support group that they worked with. In terms of how long initial visits are, so the majority of clinics needed 45 to 60 minutes for that initial visit. Actually, about 10% needed more than 60 minutes, and only about a third needed less than 45 minutes. So these are long, in-depth visits for these initial long-COVID patients. About a third, when this was done, used in-person, about a third did telehealth, and about a third did kind of patient preference or based on other factors, whether they were in the ICU, depending on what disciplines are involved, would determine whether they did an initial visit in-person or via telehealth. So about half of the clinics had some sort of formal interdisciplinary team meeting between either therapists or different clinical subspecialties. And then most clinics, about three quarters, had the potential at that initial visit to have multiple subspecialties involved. And sorry that some of these bar, these pie charts didn't come out that well. So which subspecialties tended to be involved? The most common were pulmonology and PM&R, and then physical therapy and medicine and OT and neuropsych also involved a good part of the time. And you can see the rest of the distribution with neurology, psychology, SLP kind of falling behind. And then whether clinics used or didn't use diagnostic, or used criteria to be seen in clinic. So 20 clinics out of the 45 did not use any specific inclusion or exclusion criteria. So anybody who had post-COVID who wanted to be seen in clinic could be seen. 19 of the clinics use some sort of timeframe, whether that's a month, two months, three months, and we'll go into that in a minute. 16 clinics required a positive documented COVID test. When we were first starting out, this is a much more challenging issue as most patients did not, or maybe not most, but a lot of patients did not have a positive COVID test during that first wave when patients were told to stay at home, testing was limited. With patients we're seeing more recently, this is tended to be less of an issue because testing is so much more ubiquitous. So going back in terms of the timeframe, 30% used a timeframe less than one month, with most of those being three weeks. 65% used one to three month, something in the one to three month time period. And then the rest of the clinics had some timeframe that was longer than three months. Most clinics did offer antibody testing in the case that that was a criteria to be seen was a positive COVID test. They would offer antibody testing to see if they were positive. Most clinics used some sort of standardized screening measure during their initial patient visit, and I'll go into that in a second. So this is the distribution of different screening tests used. As you can see, there's a wide, wide variety. So there was no standard screening measures that were used between clinics. Common ones being ECHOs, EKGs, pulmonary function tests being the most common pulmonary testing done, MoCA being the most common cognitive test. And then you can see the PHQ and the GAD were highly used, six minute walk test being the most common physical function. But again, there's no clear consensus of specific testing that was used. And then we asked kind of where clinics needed help, what were the burdens that the clinics were seeing? The most common ones being the need for more established protocols. So how do we actually treat these patients? Although this was several months ago that this survey was done, I think that's still a challenge. Some sort of collaborative network was brought up, a more centralized process to reduce workflow. So how do they make these clinics efficient? In terms of clinical resources that were needed, many clinics were needing more physicians kind of on the task of treating these patients with long COVID, more guidance in terms of how to do things like workers' compensation, disability paperwork, and then financial coverage for the patients to be seen, particularly by different rehabilitation providers like Neuropsych and SLP. And then small percentage, 10% needed more help with establishing patients with psychological services, which is certainly something that we have challenges at times with here. And then most of the patients, and I won't go into this slide with too much detail, had a lot of interest in collaborating, which I'll go through in a second. And how did patients wanna collaborate? Many mentioned symposiums, website, focused publications to kind of work on together between the post-COVID clinics. One really kind of optimistic thing that came out of this survey was although only about half clinics had any types of established protocols, almost all the clinics who had these protocols were willing to share that. So if you're interested in kind of starting a clinic or you don't have a clinic now, certainly if you reach out to established past clinics, I think there's a good chance that they're willing to just kind of share what they do. Certainly we would here at Penn and kind of provide those protocols and resources for you to help get you started. So that all being said, AAPMNR has led the creation of a past clinic collaborative. So I think this number has grown. I think we're up to 35 sites now. We have monthly meetings where we discuss past issues. If you have a past clinic and are interested in getting involved, certainly you can reach out to myself or AAPMNR and we can help you potentially become a member of the collaborative. It's been a great way to come up with some clinical guidance statements, which we've published one. We have a few more that are undergoing review currently as we speak. We talk about different issues that we face as clinic providers for these complicated patients. And it's been a really great experience to be involved with. So now I'm gonna kind of switch gears a little bit and talk about our response to COVID and how we've developed the physiatry-led clinic here at Penn. So initially in March and April of 2020, we closed all of our outpatient clinics. We, our inpatient rehab took patients to try to decompress the acute care hospitals. In May of 2020, we began admitting post-COVID patients to our acute rehabilitation unit. At that point, it was, it seemed kind of traditional PICS, post-critical illness type conditions. But over the course of that summer, it became pretty clear that even patients that weren't very sick initially were continuing to have ongoing symptoms. So we created the post-COVID assessment and recovery clinic. And basically what we were seeing were patients were coming in to different outpatient providers and not really having a home within the medical system. They were seeing pretty much every organ system. They were seeing somebody separate for. Sometimes they would have some experience with patients with PASC. Other times they weren't. So they'd see for their shortness of breath, they'd see a pulmonologist. For their brain fog, they'd see a neurologist. For their depression, they'd see a psychiatrist. And there really wasn't anyone kind of guiding the ship and kind of putting the pieces together. And so that's where I think physiatry can really step in and kind of lead that effort to kind of help put the pieces together and coordinate between either different providers or be that one access point for the patients when they are having issues. So again, ours was obviously centered in physical medicine and rehabilitation. I think given our background in taking care of patients with complex multi-system illnesses, I think it fits very well. My background is in spinal cord injury medicine. And as you all know, patients with spinal cord injury have bladder issues, bowel issues, spasticity, pain. And in some ways that's similar to our post-COVID patients who have multiple domains that have ongoing persistent issues. So this is our rehab team. One thing I'd highlight is that we have a social worker who's been really integral in kind of helping patients who have lost employment, who need access to public resources, things along those lines. And then the way we set up our clinic is we've identified specific providers in other specialties, which are kind of listed here, who kind of head up their team. So in pulmonology, really led by Dr. Kutloff. We have cardiology led by Dr. Hyman, Dr. Manning leading the neurology team. And then we have therapists who help us develop programs both in physical therapy and speech language pathology for cognition. And so having those go-to people either to kind of lead their teams, come up with programs, protocols, has been very helpful. You know, the challenge is still being that there's no widely accepted treatment for a lot of the issues going on following COVID. And that's something that I think we'll need to develop with time. And so the way we've kind of, again, developed our clinic, depending on what persistent symptoms they're having, we've kind of created different algorithms to treat them. These have evolved somewhat over time, but basically for any symptom, we have the person that they go to or the next steps in treatment. When should patients be seen in post-COVID clinic? It's still unclear. Usually we recommend, you know, in that acute period, shortly after hospitalization, after being sick, continuing to follow up with their primary care provider. We tend to request, and usually we request that patients be at least one month out from their acute illness. But I think it's appropriate also for a more conservative three months for some patients. Although if a patient's suffering or has a lot of serious ongoing multi-system issues, sometimes an earlier referral can be helpful. We don't require COVID positivity. If they have not been tested positive for COVID, we do tend to try to get antibodies before they come, just to try to help us clarify the picture if they likely did or did not have COVID. We start with a one-hour comprehensive telehealth visit. So we talk, we ask about the history and the course of their acute infection, what treatments they had. We ask about, you know, their early treatments during the course of their infection, whether they had monoclonal antibodies, whether they had steroids, and then also kind of for their past symptoms, what treatments they've tried. Current medications is very important, not only thinking about kind of pharmaceutical medications, but supplements as well. Often patients come on five, 10 different supplements or polypharmacy, which might actually contribute to some of their symptoms. For example, we see lots of patients taking multiple antihistamines, which may be contributing to some of the fatigue and brain fog issues, just to give one example. Comorbidities is another one that we focus on. What did they have before COVID? Did they have asthma? Did they have seasonal allergies? Sometimes these tend to get, seem to get triggered by COVID and kind of focusing more on those symptoms and those comorbidities can be helpful. And then obviously whatever other laboratory testing or PFTs and things like that have been done is also helpful. We ask about the nature and severity of their ongoing symptoms. We use standardized screening questions for all of our patients. And just to give an example, we use the hospital anxiety and depression screener. We do IES-6 for PTSD, which is particularly useful for our hospitalized and ICU patients. We use the MoCA. And then we have some custom functional questions that we ask. And then again, going back, asking about their social employment history. Have they been isolated? Have they lost their job? All that is very important as we look at kind of the holistic patient. Just to talk a little bit about kind of what we've seen and our experience. This is a little bit outdated, but 685 patients seen in post-COVID clinics since June, about 55 patients admitted to acute rehabilitation following their COVID infection. About 10% were admitted to the ICU, about 30% were hospitalized, and then the majority were never hospitalized. And then just to go through this kind of quickly, the average kind of patient reported overall health measure was 60 out of 100. Mostly about 70% reported some degree of ongoing dyspnea, about a third screened positive for anxiety and depression, about 40% screened positive to some degree of post-traumatic stress disorder, about 18% had impaired cognition, according to the MoCA, and about half had some degree of ongoing pain. Patients' areas of concern, about a quarter had concerns with their personal mobility, about 56% had concerns with sleep, and then the highest percentages were in energy and endurance, and then many, about 60%, had concerns with their ongoing memory or brain fog. So that's kind of a description of our physiatry-led Kaminar Clinic. I'm gonna pass it on to Monica to kind of discuss how these issues are treated and addressed. Hello, thanks for having me today. I'm going to be talking a little bit more also about the evaluation and treatment of some of the most common post-COVID conditions that we're seeing. I have, I'm now a co-PI in the RECOVER trial with the NIH as our center was chosen as one of them. So that's something that's new. I've discussed PASC before and have an honoraria for that and other unrelated. So the kind of, what was the course of recovery? What did we expect to see? And I think we knew about the patients who were having the COVID lungs and looked really bad. And early on, I wrote this paper with people from other countries and we said, we know there's going to be this, patients are going to be going to the ICU and the ER and the acute care unit and inpatient rehab. And what we're seeing in our post-acute and our PASC clinics, it's not always like that. And a lot of the patients you'll see over and over were not hospitalized and they didn't get inpatient rehab they just kind of stayed at home and scared in their home and watched their saturations drop. And then this is another paper where we said, well, this is what we expect to see because we've seen this with other diseases. And we know how to, as physiatrists, do early mobilization protocols and send people to pulmonary and cardiac rehab and give them speech therapy for dysphagia and such. But again, we learned that long COVID was this whole new other bag of goodies, Pandora's box, I guess. And this was one of the first studies where they had said these are the most common long hauler symptoms and fatigue and body aches, shortness of breath, concentration deficits, inability to exercise. And so some things I want to remind people of, and this happens even in my own faculty, gosh, I don't know what to do for these patients. These are things that physiatrists treat all the time. And so we have to go back to say, all right, it is long COVID, it is a new disease state, but pain, cancer, fatigue, brain injury, associated fatigue and cognitive effects, these are something that we see in many other conditions that we already know how to treat. And so we can do this. The other thing is that 25, 26% of symptoms post COVID are related to pain. Again, I mean, half my residents or more are going into pain management. We know how to treat these conditions. And so I don't want people to blow off these patients, listen to them and see what you can do for some of the symptoms that they're having. And of course the painful symptoms can be very significant for these people. The other thing that they noticed that's specific with long COVID is that even after a phase, there'll be a symptom free interval, then they may have addition of symptoms that can be new that they didn't even have initially, including new neurologic symptoms as well. So that's something that people just wanna know that others are having these symptoms that sometimes they may have gotten over COVID and felt better and the new symptoms come along. And it is probably most likely related to some of the changes that are having in the immunologic system. Whether it be a B cell response or a T cell response and women having a case for more of one type than men and one might have happened acutely while men may have a worse case initially, but women having more long COVID. So we're still learning about that and learning that. And what is their recovery? Like I said, in this study, it said it was like a coaster. I tell people it's a Corona coaster and they understand that because that's what their symptoms, they're up and down and sometimes they feel great and other times they don't. In this study that came out from Nature Scientific Reports, they looked at a meta-analysis and a systematic review of different papers on long COVID and what the symptoms were and 55 symptoms. So really across the board, it could be so many things that people are having, especially the fatigue. Headache is the second most common attention disorder. So you'll hear that a lot. Oh, I just can't focus anymore. I can't read a book anymore. I just forget that I did this or that. And so that has to do with attention, hair loss and dyspnea and then so many other things as well. And so patients, their course is gonna be different. Everyone has a different combination of the symptoms. They want to be heard. They wanna be listened to. That is the number one thing that you can do for treatment is listening to these patients and telling them that they're not alone and that other people are suffering the same things and that we're still learning about it and that yes, it can cause them to have a lot of stress. And this will bring a lot of relief to your patients. The other thing I like to bring up is that there are certain populations that we've seen marginalized communities, especially that have been overwhelmed with COVID-19 and been more affected with morbidity and mortality. And so we do have a paper where we said, this is a call to action that we need to make sure that we're providing rehabilitation care to survivors from marginalized group, for example, here, black persons. And that was part of the reason why we opened our first COVID recovery clinic in August of 2020, because I knew that the largest majority minority city in the United States in San Antonio. And so we were gonna start seeing these patients being affected. And we have, we set up a mission for our clinic and we started mostly on telemedicine since that's kind of what we were mostly doing at that time. The assessments are similar to, I mean, you saw kind of what people are doing across the board before getting onto these visits. They do questionnaires looking for anxiety, depression, satisfaction with life, a PTSD scale. We were doing mocha blinds, just depends on if they have cognitive complaints or not, a symptom screen that is aligned to the one that they do at UT Southwestern and a telemedicine physical exam. And I know some people are like, well, you can't do that much on physical exam. A bunch of these patients, because it takes a couple months to get into my clinic, have already seen lots of specialists. Their lungs have been listened to. They've had an echo that's negative. They've done PFTs. And it may be something that I don't have to listen to them, or guess what? I want to see what their sat and their heart rate is. Everyone has a little monitor because they had one when they were sick. The orders depends on their symptoms. And I'm going to go into one of our past collaborative papers and kind of will guide you on what's ordered depending on what their symptoms are. But some, if it's more pulmonary predominant and they haven't had it, they may need PFTs or spiromidy. If it's more of a cardiac, and again, some of these patients they've been seeing, they've seen cardiology, they've seen other physicians and they've had some of these tests. They've had an EKG. They've had an echo. Interestingly enough, almost none of them get tilt table or anything else for autonomic dysfunction, though that's probably one of the most common things I'm seeing afterwards, and specialty consults amongst other things. So I'm either seeing patients that have been hospitalized and had really severe pneumonia and are kind of the typical PICS patients or ones that are more mild to moderate were at home and they don't have a bad chest X-ray. They don't have bad tests and everyone keeps on testing, testing them and it's hard to find something, but they definitely have these long COVID symptoms. And across the board, we may see anything and everything as severe as someone that had a stroke and an amputation or several amputations with wounds to critical illness, polyneuropathy, to I'm getting a lot of people who are never hospitalized and have a lot of weakness and myalgias and sending them to the EMG lab and they're having inflammatory myopathies and they were not hospitalized. And again, it goes along with these are the ones they were at home. We know that, like we said, there's ACE2 receptors on the muscles. And so is it that SARS-CoV-2 gets into the muscular component causing this myopathy possibly. So this was just a very early look at our clinic data. And we have two different clinics, one affiliated with UT Health and one University Health, which is our County Safety Net Hospital to ensure that we're seeing both patients, patients with insurance and patients who are underinsured or uninsured or just have County insurance. And for the most part, 65% females in my clinic, about 75% were not hospitalized. And at this time, only two had ever been intubated. So not at all severe, even if they were hospitalized. The majority of the patients were 40 to 49 year old, and again, women. And then when we looked at race and ethnicity in my clinic, about 60% were Hispanic, which mirrors what we have in our community here. Referrals to subspecialty, the most common was physical therapy. So we made sure that we were partnering with therapy centers and that's important that you partner with therapy centers that understand long COVID and understand PASC and that a lot of those patients have a presentation of chronic fatigue syndrome and myalgic encephalitis. And that those patients you cannot overact, over exercise or they will get worse. So if they do traditional physical therapy, that'll just send them back. So you have to make sure that you're screening for that and that therapists understand that and screen for that. Cause we have the traditional patients that just might be debilitated and need exercise. And ones that if you exercise them, they will just never come back and feel like the most terrible ever. Also OT speech. The next most common thing was behavioral health as well. And these were the referrals in the order of how commonly we referred them to. So cardiology, again, mostly a lot of autonomic dysfunction, more than anything else. Pain clinic or MSK clinic to do some procedures. Again, a lot of inflammation, just causing exacerbation of previous pain syndromes. EMGs, where again, we were finding a lot of the myopathies. Palms, psych, neurology, and ID. And this was, we put a little bit more of the data together when we were applying for the grant. But kind of the main thing is that, again, here, Latinx women, 45 year olds, pre morbid conditions they did have, including hypertension and being obesity in about a third of them. And then they did a separate look at health-related quality of life. So this is something also I'm gonna tell you to stress to look at, that you're looking at social determinants of health. You're looking at a lot of these patients worry about access to healthcare and about their finances, especially if they come from some of these marginalized communities. And so really it behooves us to try to help them as much as possible and ensure they can get back to work. Because it's a 40-year-old woman for the most part. So that just goes along with that. Even the AAPMNR, as we're trying to encourage, you know, our national government to look at the long COVID crisis, that we're also saying that health equity is an issue as long, as well as the CDC and the WHO. So how to get people back, return to play, return to work. What are we doing for them? And there are some guidelines for, that are sports-related guidelines. The first thing I say is like, during the time that you're sick, you can be doing aggressive exercise, even if the people feel well. And this was recently, unfortunately, my half my household got COVID, including my husband. And I was staying completely out of the house. And I was one day, called him in the morning, how are you? I'm fine, I just ran three and a half miles. Don't go run, you have COVID. You can go for a walk. You know, you don't know if you're getting, have underlying myocarditis right now, or if you're going to have some other kind of arrhythmia. So for the first 10 days, they need to keep it easy. They need to like walk or just, you know, rest. And then they can, if they're symptom-free and they've been symptom-free from seven days, then you can start a graduated return to play protocol, almost exactly like we do for patients who have concussion, and both for athletes and for people who are, you know, pretty active people. And so, you know, there's different guidelines on what to do for that, either in JAMA Cardiology, British Sports Journal, and also with the American Medical Society for Sports Medicine. And then who needs workup and who doesn't. And it really depends if they had a past test and they were mild or moderate symptoms, and only if they, you know, have ongoing symptoms, would you do more? If they were hospitalized, then yeah, they're going to need some more testing, for sure. As far as neurologic sequelae, you know, anywhere from 36 plus developed neurologic symptoms, and it's across the board, probably if you look just at the headache data, the headache data is probably 71% of patients that have that headaches, and we'll go into that a little bit more, but it's, you know, everything across the board from Guillain-Barre and them needing intensive rehab for that, critical illness, myopathy, strokes, the typical stuff that you do for patients. If it is a COVID headache, then that's going to be one of the most common presentations, both acutely, but also part of the past symptoms, anywhere from 6 to 71%. And there's really limited data on what the features are of the headache. There is a study that came out where they looked at a survey study, a lot of patients in it, again, most of these patients were male, and they kind of said, okay, describe their headaches, bilateral, long-lasting headaches were some of the major characteristics and resistance to analgesics, like they were taking pain meds, and they didn't help, and then having pain, being male gender were more frequent ones who had COVID-19, and also anosmia and aegysia, and gastrointestinal complaints, and so that might be something that goes along with diagnosing COVID headache, kind of looking at some of those symptoms. So again, one's headache, like I said, GI symptoms, anosmia, aegysia, bilateral, and male gender. So what can we do to treat, first figuring out if it's a primary versus a secondary headache, in some patients, you need to do further imaging, especially if there are other neurologic symptoms or neurologic complaints, and making sure there's not underlying stroke, we know this is a thrombogenic disease, or something else going under lung. I'll tell you, mostly, most of the time, again, patients come with a lot of workup and imaging that has been negative, and then you just symptomatically manage their headache, that's the next step, once you rule out the secondary etiologies, and then you treat according to the phenotype, so if it's a tension headache, the usual, hence endocytaminophen, myofascial therapy, again, can work on that, they can work on posturing, they can work on strengthening, they can work on hands-on, if it's migraine, I've had some patients come in migraine status, and also in non-traditional migraine status, meaning having vestibular migraines, and not even being able to get out of bed because of that, they need to be treated, you know, as you would either with breakthrough medicines, and occasionally, I've sent some for IV agents and acute looting, IV magnesium, or some of the other dopamine receptor antagonists, and then peripheral nerve blocks and SPG blocks, we've done as well, and there is, we are now taking a look at patients that I've sent to pain clinic, which is 11 patients so far, 24 to 53, again, a little bit more male predominance, even though, like I said, most of the patients I see are women, but headaches seem to be in the men, Modi scores 4 to 60, PHQ-9, so it's causing a lot of, there's concomitant depression underneath, 10 of those had a bilateral SPG blocks, and all of them, except for one, had reduction in pain level with the blocks, 7 returned, of those 7, 4 had decreased pain, so longer-lasting pain, and 3 had more repeat injections, and none were requiring opioids, and some required other referrals. We know there's cognitive sequelae, both in HICS, but also we said patients are having these cognitive complaints for sure, and so we know there's imaging and PET scans, a lot of times, like I said, MRIs are normal, now there's some doing PET scans, some of the NIH study is going to be looking at PET scans as well, and knowing there's hypometabolism in the brain, I'm getting some neuropsych evaluations on the patients, speech therapy to help them with techniques, which, you know, even telling them to write things down, giving them their own memory techniques to use, and I will use medications, including traditional things like Dinepazil, Mamantine, Amantadine, and sometimes neurostimulants too. Autonomic impairment, definitely something that we're seeing, POTS, and these patients, their heart rate will go up when they're up, and so they need testing a lot of times. It has to be 30, but they can also be called just orthostatic intolerance if it doesn't go up to 30 within 10 minutes of standing, so again, it can be, it doesn't always have to be officially POTS, but just still autonomic dysfunction can be something that these patients have, just give them a lot of education on, you know, taking things slowly, staying down, needing to build up to exercise. This is one where they can't just do a typical, you know, Dallas protocol or the other types of protocol that there are for POTS patients. It usually takes a lot, lot longer for them and for their exercise programs, and then you want to send them to therapists that know how to deal with these patients. Again, have them drink, drink, drink fluids and take salts or take supplements that have that type of salt repletion in it. Have them avoid exacerbating things. You don't want them to be drinking caffeine that might dehydrate them or alcohol and maybe having small meals throughout the day and not getting too much heat because heat can make it worse as well. Isometric exercises, compression garments, but very, very compressive and also ones that are abdominal binders really need to do both of those. And then there's pharmacologic treatments as well, like usually starting with a low dose beta blocker, but be careful because sometimes you may need a cardio selective one. If you use a non-selective one, it could affect their pulmonary system. Fatigue is a very big deal that these patients have, you know, screen them, pulmonary cardiac, make sure it's not that. They very much, you must screen for post-exertional malaise, because that's kind of maybe a known phenotype of ME-CFS in these patients. And again, you can send them to therapy. They cannot be exercised to fatigue if they have ME-CFS, please, please, please, please. And then other things, magnesium, melatonin, omega-3, I'm very much about, you know, telling them we can't change your whole, you know, the milieu and all the inflammation that's happening, but you can do some things on your own to decrease it, including sometimes a mass self protocol in certain patients, if they have that type of presentation. This is from our past collaborative consensus. So you can go and find it in the PM&R journal. It's accessible. It's free. We have recommendations on what to do. We have diagnostic criteria for the ME-CFS. We have examples of what additional studies, tests, and referral options to do, which again, depends on what systems are involved. The big thing that we recommend is, especially for the people who get very over-fatigued, are the four Ps, pacing, prioritizing, positioning, and planning. We didn't have consensus on supplements and medications, but you can look at the paper and see what some people do. And some patients really want to have, you know, as much natural things as possible. And so really I make it kind of like a whole health. If you think of, you know, a program the VA does, just trying to make everyone's whole kind of lifestyle better. Then we have also health equity considerations that Dr. Fleming and Dr. Julie Silver and I worked on for these different statements about certain marginalized groups. There's psychological sequelae, both in long COVID and PICS. And again, work with your psychology and psychiatric partners and please treat this very much. The other thing that probably the second most important thing we can do is disability, support their disability and work accommodation. So ones who are most successful in getting back to work are usually ones who have a slow return to work program. Otherwise it's going to be too fatiguing for them and they will relapse. And then there's very many accommodations that you can see here. What do you need to document? What do you need to be able to have them to adjust to be successful at work? Long COVID is now a disability under the ADA. And so they should be able to have protections afforded under that. And then get your patients enrolled in trials if they, if you have the ability to do that, whether you're doing your own or this is the national NIH one. Which we're the site that's recruiting in Texas. And I will close with that saying that, you know, use your community, but make sure people are educated about what the needs are for these patients. Thank you. Thank you so much, Dr. Abramoff and Ferdusco Gutierrez. I appreciate you sharing your insights and time. We do have a little bit of time probably to answer a couple of questions. But before we do, I might ask Dr. Abramoff to just speak a little bit about the collaborative that AAPMNR has arranged. He's one of the co-chairs on it. And there's, you had mentioned the fatigue guidance statement, but I believe there are some others coming up. Yeah. So currently under review is a guidance statement on dyspnea and another one on cognitive impairment. There's also one coming out on psychological sequelae. And we're hoping to have a pediatrics one, which is in development and hopefully some guidance on kind of dealing with the disability aspect of this. And then one of the, there was a question in the chat, so I was starting to type it, but I guess I'll just answer it to everybody about the kind of post patients with cancer. I think, you know, it's, that's a challenging issue, but there's also patients that we see, I'm sure John and Monica would agree, that didn't have a clear COVID diagnosis, or they might've had some other infection. And we don't necessarily know kind of what the root etiology of their symptoms are. And I think, well, on one hand, you know, if there's concern that they have heart failure or CHF, you know, you have to investigate that. But on the other hand, one thing I think we can help kind of all patients with is how do we manage the symptoms? So what are they experiencing and what are the ways we can kind of treat those? So sometimes having that uncertainty is bothersome and we want to know kind of what's causing it, but at the same time, we can still, I think, help them in terms of making them feel better. Yeah, I completely agree. A lot of times we don't know the exact diagnosis in PMNR, and we still have a lot of tools that we can utilize to help patients. And that goes with this particular situation too. Yeah, I think some of those skills are going to be that we have the ability to care, to listen, to care about people's quality of life, to help with accommodations, to get them back to the best life that they can give, to provide. Yeah, I feel like we have the best tools in our toolkit. I completely agree, but I think we've about reached time. Well, and so I want to thank again, Dr. Abramoff, Viridisco Gutierrez, and thanks to all the attendees today. We appreciate your time and interest. Yeah. Thank you. Bye-bye.
Video Summary
This video is a discussion on long COVID syndrome and the importance of physiatry-led recovery programs. The speakers provide an overview of long COVID, including the symptoms and proposed etiologies, as well as the challenges in diagnosing and treating the condition. They emphasize the need for a multidisciplinary approach in managing long COVID, with physiatrists playing a key role in coordinating care and providing rehabilitation services. The speakers also discuss the evaluation and treatment of common long COVID symptoms such as fatigue, respiratory difficulties, headaches, cognitive impairments, and autonomic dysfunction. They highlight the importance of listening to patient concerns and providing support and education. The speakers also mention ongoing research and the collaboration efforts in the field of long COVID to further understand and address the condition. Overall, the video provides a comprehensive overview of long COVID and the role of physiatry in its management.
Keywords
long COVID syndrome
physiatry-led recovery programs
symptoms
etiologies
multidisciplinary approach
rehabilitation services
fatigue
respiratory difficulties
cognitive impairments
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