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Multi-Disciplinary Collaborative Consensus Guidanc ...
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Recorded Webinar
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Good evening, everyone. My name is Dr. Stuart Weinstein. I'm a physician specializing in physical medicine and rehabilitation, and I work at the University of Washington in Seattle. I'm also the current president of the American Academy of Physical Medicine and Rehabilitation. This webinar is focused on the Academy's efforts to advance the knowledge and care for people with long COVID. And to that end, I would like to share a little background on the journey we have traveled so far. Since February of this year, AAPMNR has focused on the needs of individuals who are now or may in the future be suffering from long COVID, also known as post-acute sequelae of COVID-19 or PASC, P-A-S-C. Our comprehensive efforts have led to several important initiatives. First, on March 18, AAPMNR called on President Biden and Congress to address the next COVID crisis by preparing and implementing a comprehensive national plan focused on the needs of the millions of individuals suffering from the long-term symptoms of COVID-19. In letters to President Biden and Congress and in a full-page ad in the Washington Post, the Academy made clear that the comprehensive national plan must include a commitment to three major components. One, resources to build the infrastructure necessary to meet this crisis. Two, equitable access to care for patients. And three, the research to advance medical understanding of long COVID. Also in March, AAPMNR launched a multidisciplinary PASC collaborative designed as a framework for the exchange of meaningful clinical information between medical communities. This collaborative that includes many different medical specialists and patient advocacy groups will guide clinical practice for treating and following all long-term COVID issues. A major goal of the collaborative is to share varied experiences in order to define the standards of care for persons experiencing long COVID or PASC. It is the first published work of this collaborative that you will hear about in this webinar. AAPMNR is proud to report that the collaborative now represents 31 post-COVID clinics across the United States and has expertise across multiple disciplines and also includes patient and federal government representation. The collaborative is led by a multidisciplinary group of co-chairs, Benjamin Abramoff, a PMNR physician from Penn Medicine, Eric Herman, a primary care physician from Oregon Health and Sciences University, and Jason Malley, a pulmonary and critical care medicine physician from Beth Israel Deaconess Medical Center. The collaborative's clinical guidance statements will be released on a rolling basis. Indeed, work on cognitive impairment, cardiac-related issues are currently underway. The collaborative is also focused on the development of PASC infrastructure guidance and integrating health equity into each of the deliverables, as this will be critical to support the overall call to action. Finally, on August 24, AAPMNR released its first long COVID dashboard that demonstrates how millions of Americans are estimated to be experiencing long COVID symptoms across the counties, states, and the entire nation. Our dashboard is based on data from Johns Hopkins University and the U.S. Census Bureau, and the dashboard has options for estimating the number of long COVID cases based on different assumptions and percentages. I encourage you to visit the website to learn more about this dashboard. And now it is my pleasure to introduce some of the authors of the multidisciplinary collaborative consensus guidance statement on the assessment and treatment of fatigue in PASC patients. Please enjoy the webinar. Dr. Abramoff, the floor is yours. Great, thank you. So my name is Ben Abramoff. I'm a physiatrist, as Dr. Weinstein said, at University of Pennsylvania. Just a quick note on conflicts of interest. Nobody who is participating in this webinar or presenting at this webinar has any pertinent conflicts of interest to disclose. So the learning objectives of today's meeting is to, one, be able to recognize and apply what we're going to discuss about the PASC consensus guideline on fatigue into everyday practice, some specific components of that, identifying and diagnosing fatigue in individuals with PASC, what is fatigue, what does it look like, analyzing PASC fatigue presentation and assessment recommendation. So how do we manage these patients as they come to us in clinic? And then as part of all this, ensure that health equity is understood in this context, because even in something as specific as PASC related fatigue, there are a lot of health equity considerations at play. One important kind of caveat, disclosure at the beginning of this, always look at the patient in front of you. This is just guidelines in the big picture. Obviously, every patient will have different comorbidities, different past medical histories, taking different medications, and they have to be looked at in that context. But this is based on really a widespread effort among many different clinicians to come up with general guidelines that work in many cases. So in order to discuss, this is the discussion how we came up with these guidelines. So it started with a joint discussion amongst the collaborative participants about what areas were worth discussing, what were the priority areas, what were people seeing in their clinic, what was research saying were the most common PASC symptoms. And then as that discussion came underway, we came up with a list of priorities, fatigue being the first one on that list. Then as a group, we discussed some of these issues amongst ourselves in terms of what is the presentation of fatigue look like? What are some workup recommendations? What do you think about in terms of the differential? And what treatments have been effective in your clinical practice in treating patients who are presenting with PASC related fatigue? Within that larger collaborative, a smaller writing group was then created of people who have either increased expertise or interest in this topic. And the writing group as a smaller group came together and drafted recommendations in all those areas, assessment, treatment, presentation. And then as a smaller group, they voted on those. And when they reached 80% threshold, they were included in the recommendations to the greater collaborative. There was also a parallel process at the same time for health equity issues. Once those recommendations were solidified, they were sent out to the full PASC collaborative for a vote. So every member of the collaborative voted on each of the specific statements. They could either approve it, approve it with considerations, or reject it. Statements needed 80% consensus to be retained. Statements with 60 to 80% approval were discussed further and refined, excluded, or included potentially in the discussion section that's included as part of the collaborative statements. And once those statements had all been voted on and approved, edits were made based on the collaborative discussion, the collaborative input. And then the writing group again went back to those recommendations and refined it, included more in the discussion of those recommendations as well. And then as that whole statement was created and put together, they were sent back out to the collaborative where a consensus vote was once again taken on the collaborative recommendations as a whole. And from there, it was submitted for publication. Throughout this whole process, patient perspective, patient input was taken into account. There were active members of the collaborative meetings, which was very helpful. And that's how we got here today. So it's been a really extensive process. It's been a really challenging process, but I think a really rewarding one in terms of getting those most defined recommendations out to people as soon as we could. I'll take over. I'm Joe Herrera. I'm the chair for the Department of Rehabilitation Medicine at the Icahn School of Medicine at Mount Sinai. And first, I want to thank Dr. Abramoff for his leadership and all of the people that were involved in the collaborative for doing all the hard work to put all of this together. Who knew that we would be in this place today once the pandemic started? Everything from the inpatient side to the outpatient side, I feel like we've seen a change in our patient population. We started to see some of the new, the lingering symptoms here at the Mount Sinai COVID clinic early on. And one of the most prominent symptoms is fatigue. Fatigue is a feeling of tiredness, lack of energy. It can be physical, cognitive, emotional. It can range from mild to severe, intermittent to persistent, and affect a person's energy, motivation, and concentration. Fatigue can negatively affect an individual's sense of well-being and quality of life, and generally lacks objective markers, which makes it difficult. Fatigue during an acute viral illness is common. However, individuals with PASC are often presenting with long-lasting and debilitating fatigue after recovery from their acute viral illness. Next slide. So here is some of the recommendations for assessment for fatigue. It is not unusual for individuals to have persistent and fluctuating fatigue during the recovery from acute COVID-19 disease, particularly in the first one to two months. This fatigue can involve both physical and cognitive components. This webinar focuses on physical fatigue, and a subsequent consensus guidance statement will focus on cognitive issues. Additional assessments and management of post-COVID fatigue should be considered if a patient is not continuing to improve after the initial four weeks beyond symptom onset. If symptoms are severe, or if the patient is experiencing negative impacts on quality of life in cases of mild fatigue and is not functionally limiting, it can be monitored for improvement as part of the natural recovery from COVID-19. Common descriptions of related fatigue include severe exhaustion after minimal physical or mental exertion. So some patients may report that they just completed their laundry, and then they were they crashed for the rest of the day. They'll report that they had good days, and they'll take one step forward and 10 steps back. Persistent tiredness or exhaustion after sleep upon waking. So this fatigue presents in a number of different ways. So initial thoughts is when we assess the patient is looking at the patterns of fatigue, trying to find their energy envelope. So that may include patient's responses to initiating and escalating activity of their fatigue, changes in their daily function and activity levels. So they may say that they're better in the morning or better at night. Physical functioning and endurance should also be assessed in order to inform activity and therapy recommendations. So some of our collaborative members have suggested using the 30-second sit-to-stand test, two-minute step test, six-minute walk test, 10-meter walk test. Now mind you though, these tests should be used only if the patient can tolerate it. What we've seen and what's been reported during our collaborative is that some patients are not able to tolerate the six-minute walk test and may actually have negative impact on their recovery. So please be cognizant of their ability to tolerate this activity. Second, we need to assess them for their changes in their ADLs, IADLs, school work, and hobbies. Third, a full patient history with a review of pre-existing conditions should be conducted. Patient number four, patients should be evaluated for conditions that may exacerbate fatigue symptoms and warrant further testing and potential subspecialty referrals. So this may include cardiopulmonary, autoimmune, endocrine. It may also include depression, PTSD, but patients often report a dissatisfaction with their care due to their persistent symptoms being attributed to psychological factors. So please be cognizant of that. Five, investigating medications that may be contributing to fatigue of antihistamines, anticholinergics, antidepressants, can contribute to fatigue in patients with PASC. And last but not least, basic lab workup should be considered in new patients of those without lab workup in the last three months prior to the visit. So this can include their complete blood workup, their complete blood count, their CBC chemistries, inflammatory markers. But mind you, if the clinical picture dictates, other tests may be indicated. Next slide. So the presentation of fatigue in individuals with PASC may appear similar to myalgic encephalomyelitis, chronic fatigue syndrome, also known as ME-CFS. ME-CFS is a complex syndrome that often occurs following viral illness. This is the 2015 Institute of Medicine report of ME-CFS, which creates specific diagnostic criteria as outlined here. The specific pathophysiology behind ME-CFS has yet to be discovered. The CDC has developed treatment recommendations for ME-CFS that have been used to help develop the current treatment recommendations for PASC-related fatigue. However, more data is needed to determine if PASC-related fatigue is a manifestation of ME-CFS or if individual PASC-related fatigue represents a distinct process. So a lot of research still needs to occur. Next slide. Howdy. My name is Bill Niehaus. I'm one of the rehab physicians out here at the University of Colorado. And I'm really going to start to jump into discussing the specific different treatment recommendations we came to through this process. These particular recommendations are really based on the PASC collaborative clinics who have really tried to help alleviate these symptoms in patients in different cases. And with cases which specific contributing etiologies haven't really been identified or despite trying to address those different areas, the symptoms are still persistent. As with any treatment plan, it's important to discuss with patients beyond the specifics of these recommendations and really go into the pros and cons of the possible different treatment options we might be going into today. How the time course of long-haul or post-COVID symptoms are still a little bit unknown, but based on the collaborative group, they do seem to get better in patients slowly over time. And then it's also important to really monitor how these treatment options are really impacting the patients and how they're improving their overall level of function. And as additional options or treatment modalities emerge, they're going to be added to these in the future as they become more studied on a periodic basis. The additional techniques that we're going to go through are summarized on the next series of slides. But in general, the big picture view is to begin an individualized and structured titrated return to activity program notice. We didn't say exercise specifically because there's some issues potentially with that. We also intend to go through the different energy conservation strategies to really encourage healthy dietary patterns and overall hydration, and then to treat them with the appropriate specialists given the underlying issues that seem to be ongoing. And those could be sleep related, could be mood related, could be other systems related, and we'll kind of go through some of those recommendations as well. Next slide. So, in general, we broke down some of these recommendations based on the severity of the process that they're presenting to your clinic with. Starting with mild and I'll progress through fatigue before I hand this off to my next colleague. The goal of all of this is really to restore patients to their prior level of function and to improve quality of life. And all of these, as I said, we're focusing on activity and not focusing on or encouraging high intensity aerobic exercise to improve overall function and quality of life, and we're not recommending specifically heavy weight lifting to kind of gain function. And if the rehabilitation program is advanced too quickly or too intensely, it may worsen symptoms or possibly lead to or exacerbate the post-exertional malaise or the ME CFS scenario. We're going to go through these, like I said, starting with mild, and most of you are probably already reading this slide. And the mild situation is really they're able to do most of their activities of daily living. That might be light housework in addition to some of the IADLs. They might be able to even go to work intermittently, but their overall activity level has been changed. They're taking time off. They're modifying their schedule. They're using their weekends to recover from a heavier work week. In these scenarios, we're really overall talking about patients continuing the activity level they're tolerating and then trying to increase that activity level. And one of those examples is using the rule of tens, where they're increasing the duration, the intensity, or the frequency of an activity by about 10% every 10 days and using some form of an exertional scale to really grade how aggressively they are engaged in that activity, really trying to avoid the higher intensity levels in this scenario as well. If they don't feel comfortable with engaging things at this point, it might be helpful to think through some of the moderate or more advanced stages of this or referring to them to a more comprehensive clinic or therapist that are more used to dealing with these types of situations. Next slide. Moving into the more moderate category, these are individuals that have really decreased their community engagement and mobility. They're limiting their performance on some of those IADLs, whether that's meal preparation, going out and doing the shopping, the laundry, transportation, and they're requiring more frequent rest periods and naps, potentially even having stopped work or school. In these scenarios, like before, continuing some of those things that are not generating that fatigue and post-activity kind of downturn and trying to encourage them to gain, and as you can see, this perceived exertional scale is a little bit lower than the last one, where we're really trying to advance them as they tolerate and work through some of their symptoms mildly, but not over-exerting themselves. If you're having trouble in this scenario, we really kind of do recommend engaging some of those rehabilitation therapists and specialists who are more aware and engaged with this post-COVID community and trying to get them to set up a more guided activity return program. Next slide. In the more severe situation, these are the people that are having impairments and difficulties even completing those activities of daily living, the eating, bathing, dressing, toileting, and mobility type tasks. They are probably experiencing several days or prolonged periods of severe fatigue even after some minimal activity. In this scenario, just like the other ones, we're trying to engage with that activity program with what's submaximal to generating that prolonged fatigue situation, and again, that perceived exertional scale is even less, where it's very light activity to try and gain momentum in this area, and this is where you're kind of moving beyond just the therapists that engage with this and really starting to involve the other health care members in this community to really evaluate, is there other things going on that are contributing to this situation? That might mean our colleges in pulmonary, cardiac, and physiatry to help really set up a team environment and approach to help these patients return to their prior level of quality of life. I'm going to turn this over to the next slide and the next presenter. Thank you so much, Bill. I'm Jonathan Whiteson. I'm a physiatrist at Rusk Rehabilitation in New York City. I am co-chair of our PASC clinic here at NYU. I do want to mention Alba Ozola, who was supposed to be presenting these slides, was not able to present tonight. I don't sound like her, nor is she like me, but consider these her words. Alba has put a tremendous amount of work into this, and credit to Alba and to everyone who's participated in this process. I do want to start by stressing this really was very multidisciplinary in terms of the input that was shared and the role and value of the patients and the patient groups that participated. We really did listen and engage and learned so much from the patients who really are the consumers of the care that we're talking about tonight. This really is for them and guided by them. They were really central to the structure of what we're discussing tonight. Some of the treatment recommendations, we'll continue talking about this. We're going to talk about energy conservation and the four P's of energy conservation, including pacing, prioritizing, positioning, and planning. Again, we all recognize that a multidisciplinary group of clinicians may be managing and treating patients in the community. While energy conservation may be familiar to a lot of physiatrists, it may not be familiar to other physicians. Sharing this information and recognizing that we need to educate healthcare providers in terms of energy conservation is important, but also it is vitally important that we educate patients in energy conservation. This is what we must be doing. Hence, the focus on this in the guidelines. Pacing is the concept of avoiding the push and crash cycle that we're seeing commonly in post-COVID recovery, recognizing that some patients really do have significant post-exertional malaise. It's important that we avoid that through pacing. We want to help people keep activity to reasonable, often shorter durations. They must schedule rest breaks and avoid or moderate activity that leads to the need for prolonged recovery periods. It's about helping patients recognizing what is causing them to crash and burn and to pace. Prioritizing as well is about encouraging patients to focus and decide on what activities need to get done on specific days and which activities can be postponed. It's important to understand what is vital and what can wait till the next day so that people can get through each and every day without reaching that crash part of the push and pull cycle. Positioning is also important and recognizing what activities can be modified to make them easier to perform sitting during an activity. Again, for many patients who have PASC-related fatigue, many of them are young and would never think about sitting during an activity, but helping them realize and recognize that sitting does make a difference in terms of energy conservation is important. The use of necessary equipment like bathroom equipment, shower chair, or bench can also help in terms of positioning. And finally, the fourth P in terms of planning. How do individuals with PASC plan the day or the week to avoid overexertion and to recognize energy windows? Certainly, patients do realize that there are parts of the day where they feel they have more energy and parts of the day where they have less energy. Recognizing those energy windows as time when they can actually accomplish more tasks makes sense for them and allows them to take advantage of those windows. Keeping a diary of good days and bad days and the energy windows is also helpful for optimizing the timing of therapy if it's needed and specific activities. Of course, many people who have many individuals who have PASC want to return to work and return to work accommodations are also important to recognize. Individuals with limitations and disabilities are entitled to accommodations and as clinicians taking care of individuals with PASC who are fatigued and are limited, we have to educate them and help advocate for them to have work accommodations. Work accommodations can include limitation on the number of hours that are worked in any particular day, working from home, adjusting work activities such as seating instead of standing and walking, using durable medical equipment, mobility aids, providing additional rest breaks throughout the day, and adjusting the work environment such as allowing people to work to park closer to their work entrance so they don't have to walk so far across a distance parking lot. Also, and very important for some people who despite accommodations are having challenges with work, referral to vocational rehabilitation counselor is also important and most if not all rehabilitation centers will have a vocational rehabilitation counselor who can work with patients to help them get the needs and the training and the education in order to work and be part of the workforce. Next slide. So the PASC fatigue recommend treatment recommendation number three encourage patients to follow a healthy dietary pattern and stay hydrated throughout the day. There is no scientific data to support the prescription of any one particular diet for the management of PASC related fatigue. Nutritional guidance really should recommend and reflect an individual patient's underlying comprehensive health profile. So if somebody has underlying dyslipidemia or hypertension or diabetes or obesity, the diet really should conform to those underlying health needs, but should also include a diet that we consider to be well balanced, including abundance of vegetables, fresh vegetables, fruits, whole grains, healthy fats, fish, poultry, beans, eggs, and dairy, and a limited intake of red meat. Hydration is also important and the adequate intake of water is key. The avoidance of dehydrating drinks, including alcohol is also something to be discussed and considered. And also regarding caffeine in terms of something that may dehydrate people. But on the other side, many people have been taking caffeine in terms of a central neurologic stimulant in order to help overcome what might be considered centrally related fatigue. So that certainly can be discussed with your patients. Patients who have had acute symptomatic COVID-19, it's felt that there is an associated vigorous immune response and PASC has been theorized to be related to the persistence of this immune dysregulation. The link between pro-inflammatory states and chronic disease related fatigue is also of interest. Single nutrients, including polyunsaturated fatty acids, antioxidative vitamins, polyphenols, and specific diets, which are rich in fiber, polyphenol-rich vegetables, and omega-3 fatty acids are suggested to have anti-inflammatory and fatigue-reducing effects and can be discussed with your patients, although further confirmatory research is needed. There's been a lot of discussion and certainly individuals who have passed discuss and talk about mast cell activation syndrome with histamine release, with symptoms of histamine intolerance, including headache and asthma, runny or blocked nose, nasal congestion, low blood pressure, irregular heartbeat, hives, itching, diarrhea and flushing. Individuals who have mast cell activation syndrome, which may play a role in past-related fatigue, may not tolerate foods that are rich in histamines, including cheese and fruit, seafood and nuts, and may benefit from reduction or elimination of those foods from their diet. In PASC, there have been anecdotal reports suggesting improvements in some individuals. Dietary recommendations have also been made for individuals with ME-CFS. These may be beneficial for PASC-related fatigue, and some of those suggestions include eating little but often, low glycemic index foods, as in more complex carbohydrates, and a balanced diet including fruit, vegetables, fish, meat, dairy, nuts, beans, and pulses. Fatigue related to autonomic dysfunction is also a consideration, especially in people with postural orthostatic tachycardia syndrome, or POTS, and ensuring that individuals take an adequate amount of water and salt is very important. This is also going to be discussed in future consensus guidance statements when it comes to cardiac and autonomic dysfunction. Small and frequent meals are tolerated better, and diets higher in fiber and more complex carbohydrates in individuals who have POTS. Fatigue may also be related to muscle atrophy, and in the context of weight loss, if that is reported in individuals with PASC, this can be improved with the appropriate caloric and protein intake in addition to activity. Next slide. As has been discussed, it is very important to treat fatigue, especially fatigue that is significant and persistent in collaboration with the appropriate specialists, and identifying underlying medical conditions, pain, sleep disorders, mood disorders, which may all contribute to fatigue. We talk about Table 2, and the next slide, I believe, should be Table 2, and I'm not going to go through this in detail, but you can see in the consensus guidance, we did address cardiovascular, pulmonary, endocrine, autoimmune, mood disorders, and sleep disorders as potentially contributing to fatigue, and what the common signs and symptoms are for each of those conditions, what further studies may be required, and then who the specialist referral should be if it's felt that those systems are a part of the fatigue in PASC. Thank you. Good evening. My name is Dr. John-Michael Baratta. I am an assistant professor at the University of North Carolina, Chapel Hill School of Medicine. I am going to speak briefly this evening about some items that were discussed in the collaborative, but did not achieve consensus opinion through the process described by Dr. Abramov earlier. Some PASC collaborative clinics do not use pharmacologic agents, whereas others do use agents after conservative management has been tried and comorbid conditions have been addressed. Supplements that have been suggested to alleviate chronic fatigue and other causes of chronic illness, such as fibromyalgia, ME-CFS, multiple sclerosis, include branched-chain amino acids, omega-3 fatty acids, vitamins B12, C and D, magnesium, L-carnitine, CoQ10, ginseng, echinacea, and others. These supplements have been suggested to support the immune system, reduce inflammation, help with healing, and potentially improve fatigue. It is important to note that there was no consensus on the use of these supplements, and they should be considered on a case-by-case basis, recognizing limited scientific evidence, as well as potential risks, including medication interactions, possible side effects, and we should also be mindful that these can be costly supplements at times, and there is a lack of regulation. Additionally, there are several medications, which are shown on the right side of the screen, that are used for fatigue in other populations, such as with ME-CFS, cancer, etc., and some of the past clinics that were involved in the collaborative prescribed these medications for past-related fatigue. Specifically, we discussed amantadine, modafinil, and methylphenidate. These have been utilized by some clinics with good responses, however, these should be considered only on a case-by-case basis. There are other medications that have been suggested for treatment of this condition of PASC, including antivirals, antibiotics, antiparasitics, and others. However, the trials are very limited or do not exist for most of these drugs, and therefore, it is important to only utilize them on a case-by-case basis, and they are not recommended through the collaborative group. Next slide. The use of acupuncture has also been reported by a collaborative patient representative member, and this was for use of improving fatigue. There has not been direct evidence to support its use in PASC-related fatigue, but there is some preliminary evidence that supports its use in ME-CFS. Next slide. Good evening, everyone. My name is Talia Fleming. I'm an associate professor and physiatrist at JFK Johnson Rehabilitation Institute at Hackensack Meridian Health in New Jersey. I'd like to extend a thank you to the AAPMNR, the PMNR Journal, my associate collaborative members, as well as everyone else on the call tonight that helped to make the lives better for individuals with PASC. In the context of PASC, it's important to focus on health equity, health disparities, and social determinants of health. In addition to physiatrists, diversity, equity, and inclusion subject matter experts like Dr. Julie Silver and Dr. Monica Verdusco-Gutierrez, we partnered with other members of the health equity writing group, focusing on the inclusion of principles into the clinical practice guidelines through a health equity lens, as well as fatigue. We achieved this in two different ways. Number one, as a table included as an appendix at the end of the manuscript, and number two, information is also included in the body of the manuscript itself. This table that you see on the screen is included in the appendix of the fatigue statement and provides additional information for clinicians who are treating patients for PASC-related fatigue. This is not intended to be an exhaustive list, but rather to provide clinical examples as they relate to health equity, health disparities, and social determinants of health. The literature demonstrates that many marginalized and under-resourced groups faces access to care barriers, though these may or may not be barriers for a specific individual patient. And people with intersectional identities, for example, those who identify with more than one underrepresented or marginalized group, often face enhanced levels of bias and discrimination. The leftmost column of the chart describes different categories of underserved groups. The second column describes a comment or an overarching principle related to that group. The third column is what is known thus far in the literature with evidence-based medicine, and the last column describes clinical considerations for integrating health equity for this group. An example of how this is used is within the first row, taking a look at biologic sex, and the example used here is for pregnant women. Study shows that pregnant women are often overlooked and not addressed in clinical practice guidelines, so we were very specific to include their perspective in our clinical guidance statement. The comment is that physiologic and biologic sex differences should be considered for both the diagnosis and treatment for PASC-related fatigue, and we know that pregnant women frequently have pregnancy-related fatigue, and they may be at higher risk for more severe COVID-19 infection and symptoms. So, putting this together, pregnant women who are status post-COVID-19 infections may experience pregnancy-related fatigue in addition to PASC-related fatigue. They may also need alternatives to diagnostic testing to limit radiation exposure to avoid potential harm to the fetus, and the risks and benefits of medication should be included not only for the mother but also to the fetus. Exercise prescriptions may need to be adjusted to relate to impacted symptoms such as excessive vomiting, weight loss in the first trimester, large girth, back pain, or even preeclampsia in the third trimester. I won't have time tonight to go into detail for each category, but this sequence is repeated for other areas as well. For example, for the gender-related row, we highlighted transgender individuals. Assessing the current and planned future gender-affirming care for transgender patients is important, taking into account, especially with fatigue, whether or not hormonal status, sleep, and mental health should also be prioritized. With respect to racial and ethnic minority groups, for example, those identifying as Black or African American, those identifying as American Indian or Alaska Native, Pacific Islander, Asian American, mixed race, and or Hispanic or Latino ethnicity. We know that PASC-related fatigue is also multifactorial, with its effects compounded for individuals already under the burden of racial and ethnic disparities and injustice. Standardized treatment and management protocols may help to reduce implicit bias for these groups. Also, it will be important to address areas such as low-cost healthcare, food and housing insecurity, health literacy, as well as access to low-cost information, access to transportation, and help obtaining or maintaining employment. Local and national advocacy is needed to address ongoing systemic inequities for these groups. An often overlooked group of individuals are the justice-involved persons. Those are individuals or who are incarcerated, who are detained in prisons or jails or youth detention centers. We know that for this group, public health measures should be modified compared to general community recommendations, understanding the fact that social distancing, quarantining upon exposure, and separate bathrooms may not be possible for this group. Also, it may have unintended physical or emotional distress, worsened by PASC-related fatigue. Early and continual access to quality physical and mental healthcare is important, and keeping in mind the fact that healthcare disparities in the context of social determinants of health lead to a disproportional amount of racial and ethnic minorities within the criminal justice system itself. Next slide. Another group we looked at are those with disabilities, so people who have impairments in physical mobility, psychological or mental health ability, vision, hearing, emotional, or social relationships, as well as those with different cognitive or learning abilities, speech or communication abilities. In general, the federal government has several laws which are established to protect the rights of disabled persons, and we know that those with PASC-related fatigue often require additional help to obtain disability insurance, a home health aid. They may need access to durable medical equipment, for example, a hospital bed or mobility or communication aids, as well as workplace and school modifications, as mentioned earlier today. Strategies for information dissemination should also include options for those individuals who are visual, hearing, communication, as well as learning impaired, and when possible, clinicians should consider telemedicine options, such as telephone calls for those who do not have access to smartphones, consistent internet broadband access, or the knowledge to operate video telecommunication. For individuals related to immigration or for people who have come from another country to live in the United States, diagnostic workup and treatment may take place in the context of patients who are uninsured or underinsured, persons having physically demanding jobs, or persons who may have difficulty taking off of work for financial reasons. Also, we need to keep in mind that certain groups may be living in close quarters that may disrupt their sleep. Strategies including engaging community leaders, providing virtual patient navigators, as well as using language-appropriate educational materials will help access for these groups. Next slide. With respect to religion or people who identify with a shared belief in what is sacred, holy, divine, spiritual, or reverent, certain religious practices such as fasting may increase symptoms of fatigue. Fatigue may also reduce physical activity affecting physical conditioning and their ability to participate in rehabilitation therapies. We should also keep in mind that certain nutritional supplements, natural remedies, and faith-based practices may have varying potential for either anti-inflammatory or antioxidant properties related to fatigue, and that these should be considered in conjunction with an experienced professional, and if deemed safe, should be used as a complementary manner along with evidence-based therapies. Next slide. In addition to the appendix table, there is also diversity, equity, and inclusion content integrated into the fatigue consensus guidance statement main text. So, this is an example from the text itself. It says COVID-19 symptoms may be more severe in pregnant women and pregnancy itself, as well as the postpartum period as a well-known cause of fatigue. In conclusion, we know that in order to promote high-quality care in individuals with PASC, we need to have a comprehensive look at their overall care. We need to ensure that resources are equitably available for those affected to maintain their physical as well as their mental health. When policies, programs, and systems that support health are equitable, poor health outcomes can be reduced, health disparities can be prevented, and the whole of society benefits. Thank you. Thank you, Dr. Fleming. I think that was a great overview of considerations in terms of health equity issues when thinking about these PASC fatigue guidelines, guidance statements, and I think that has been very helpful in kind of how we even approach fatigue to think about these issues. So, just to summarize and discuss kind of next steps, individuals with PASC-related fatigue can experience severe disability and frustration. It can affect all aspects of life. It can impact employment, hobbies, ability to do ADLs, IADLs. I think all of us in the collaborative have seen the full spectrum of fatigue. Other people just have mild fatigue and can't go for do the activities that they once did, stay up late, play with their kids as long, things like that. The goal of this collaborative and this guidance statement is to give clinicians some tools in their arsenal to approach fatigue. How do they think about it? How do they approach it? What questions do they ask? How do they use the responses from those questions to dictate treatment? This, as I mentioned, represents a wide variety of different specialist input. We had pulmonologists, physical therapists, occupational therapists, neuropsychologists, primary care doctors, neurologists. The list goes on and on, and I think having that diversity of views of people who've seen PASC-related fatigue from many different perspectives has really been useful in creating these guidance statements. Again, we're still learning a lot. These recommendations are based on current evidence, extrapolation from other conditions, whether that's CFS, POTS for the cardiac dysautonomia statement, mast cell degranulation disorders, as well as the combined clinical experience. As a group, we've seen thousands and thousands of patients with PASC. I think that experience has really helped in creating these guidance statements. But there's still many questions that we need to learn as a community. We need to know, again, what's the root cause of PASC-related fatigue. I think once we have a better understanding of that, we'll have more directed treatments able to address it. As we learn more, as more studies are done, more high-quality randomized controlled trials, these guidance statements will be periodically reviewed and updated as appropriate. Next slide. Great. Well, thank you so much, Dr. Abramoff, and to the entire panelist team for this great presentation. I'm Jana Freedley. I'm a professor of physical medicine and rehabilitation at the University of Washington and the medical director of the UW's post-COVID clinic, as well as the editor-in-chief of PMNR. I just want to remind people that you can access both the methodology statement and the fatigue consensus statement through the PMNR journal. It was just published in the September issue, and a link was provided in the chat function earlier. We would like to, in the last few minutes, open this up to questions from the audience. We have had a couple of questions come in, and we have one person raising their hand, so please feel free to raise your hand or type in questions in the Q&A session for questions. The first question relates to sleep, and so we mentioned quite a bit the relationship between sleep and fatigue and the need to assess sleep dysfunction and disorders as part of the assessment for fatigue, and I think all of us have seen that relationship. So the question that's come in relates to what are some safe medications to use, particularly in older adult populations and populations that have cognitive issues, where a number of the sleep medications may have side effects that impact those populations in particular. So I'm hoping one of the panelists will jump in with their perspective. So I'm happy to start. So a couple things. One, we are going to have cognitive impairment guidance statements coming out just to kind of give people a heads-up, so keep an eye out. I believe that's the next one kind of set to move to the next stage. The next thing I'd say is sleep and insomnia, I think all of us would say is a major issue for a lot of patients with PASC. Now, where it fits into the pathophysiology, is it just a related comorbidity? Is it a cause of cognitive impairment? Is it a major contributor to fatigue? I think, again, like many of this, there's a spectrum. For some, it's the primary issue. And if they had their sleep improved, their fatigue, their cognitive impairment, in a lot of those cases, when that does happen, it gets better. In terms of how to think about these patients, obviously, there's a lot of considerations. Sleep disordered breathing, particularly in people who may have been critically ill, have cardiac or pulmonary manifestations from their acute COVID, is an important consideration. So, you know, if there's any concerns there, I think having a low threshold for sleep studies is usually a good idea. I think, in terms of kind of more conservative recommendations, certainly sleep hygiene, many of these patients have never, don't know anything about it, they've never been exposed to it, particularly in some of the, well, kind of throughout the gamut. Cognitive behavioral therapy can be very helpful, specifically for sleep. Medication-wise, I think there's a lot of different options. Melatonin is one that some patients really do benefit from, and it's, you know, easy to get, cheap, has relatively low side effects, hardly at all. So that's one that I'll prescribe as a first step in a lot of cases. And then, in terms of other medications, I think thinking about what else the patient's experiencing, are they having a lot of anxiety, are they having a lot of depression, are there things that we can kind of treat, two birds, kill two birds with one stone, trazodone, Ambien, there's a lot of options out there beyond that. But I do think addressing sleep is central and really important to kind of many of the post-COVID symptoms. Great, and I think it's important to recognize that there is no one single medication that is right for every patient. And so, again, this is, this is where it's really important to do those really complete assessments and take into consideration comorbidities and age and causes of insomnia. So that's really helpful. Thank you. Fredly, I just want to share my experience. Okay. Hi, this is Dr. Nalkwi. So I totally agree that sleep is playing such a big role in improvement of fatigue also and making it worse also. So in my clinical experience, I have been trying auricular acupuncture and especially the battlefield protocol, and it has been showing significant improvement in sleep pattern also and overall fatigue. So this is an area which is like kind of underexplored for the insomnia and especially for the COVID patient. But I've been treating a large population now with this type of treatment and protocol, and most of them are coming back with the report that they are sleeping very well and which is helping with their fatigue also. Thank you. Great. Thank you for that. So we have a number of questions and we may not be able to get to all of them, but I'm going to highlight as many as we can. So the question came in specifically about fluvoxamine and the new studies that have come out looking at fluvoxamine reducing progression to severe COVID and long COVID. And any thoughts from the panelist team specifically about fluvoxamine, although it's not included in the fatigue statement? So I'll jump in again, and I'm going to give kind of a roundabout, evasive answer to this question. I would answer, and this is something I get asked about a lot in terms of vaccines, do vaccines prevent PASC? And, you know, is that a treatment for PASC? And, you know, one thing I say in terms of as a preventative measure, anything we can do that reduces the transmission, the severity of acute COVID, is a preventative measure. So I would say reduces the transmission, the severity of acute COVID, to make it less, you know, the people who I tend to see in clinic are the ones who were in bed for a month, or they were hit really hard by that acute illness, or obviously the patients that were in the ICU or hospitalized for prolonged periods of time. So if we can reduce the severity and the acuity of that first COVID illness, their acute COVID tends, in my opinion, at least, will reduce the incidence of PASC. Now using it directly for PASC, somebody who has established PASC, I don't really have any answer either way on that. Yeah, and I think that there will be more data coming out about that, but that is a medication that has shown some promise in early studies. So I think it's something that we need to keep an eye on. But like with all of the other medications, at least from my standpoint, we don't have enough evidence specifically in this patient population to really have any definitive answers about any of the medications. I do want to skip to a couple of questions that perhaps the group can answer. One is, how can independent or physiatrists become affiliated with PASC clinics, and what support is available from AAPMNR or a greater medical community for physicians coping with their own PASC recovery? So those are sort of two questions, but related to becoming affiliated with clinics and seeking care as patients. Dr. Niehaus? I can try and tackle these. In terms of how can an independent, whether it's a physiatrist or someone else in the community, get affiliated with PASC clinics, you can kind of see who has been involved in some of these larger group organizations and see which institutions are really kind of engaged in this and trying to help lead the charge in this area. And that's an easy way to kind of get ties and contact information for particular regional areas that might be able to get you tied in or help see those patients that are extra difficult or difficult to manage for various reasons. In terms of what support's available from the AAPMNR community for the greater community group, and that's really, I believe, correct me if any of this is wrong, but that's why these guidelines are coming out in a serial fashion and why we're really trying to tackle a lot of these areas that seem to be hard-hitting, whether that's pulmonary situations, the cognitive situations, the fatigue-type scenarios that patients are coming in or being managed by primary care, and really trying to lead the charge with a multidisciplinary approach to get information out there for those community providers to help engage this population and help treat them and get them to that better quality of life and functional reserve that they had before. Yeah, I mean, I would just kind of second that. I think everybody I've interacted with and everybody who's involved in these task efforts really have an interest in collaboration. I mean, that's why they're part of the collaborative. And I know many, many of us have talked to many community physicians who are now part of their medical center and given insight. Again, the purpose of this is really these guidance statements is to give you tools to help treat your own patients. A lot of the past clinics have long wait lists and time to get in. So I think most of us are very happy to kind of help facilitate that. And me personally, and I think many of the panelists are always happy if you want to reach out to us and answer specific questions. I'm personally happy to do that. Great. Well, thank you. Thank you so much for that. I know we have a number of questions that are still in the Q&A box that we won't have time to cover today. We'll try to answer them individually. But I want to really thank the panelists, thank AAPMNR for all of the support and hard work that has gone into all of the initiatives related to the collaborative. And thank everybody who has joined the webinar tonight. I think it was incredibly informative. And I look forward to seeing what this collaborative comes out with next. So thank you, everybody, for joining tonight.
Video Summary
The webinar focused on the American Academy of Physical Medicine and Rehabilitation's (AAPMNR) efforts to advance the knowledge and care for people with long COVID. The AAPMNR has called for a comprehensive national plan to address the needs of individuals suffering from long COVID, including resources, equitable access to care, and research. They have also launched a multidisciplinary PASC collaborative to guide clinical practice for treating and following long-term COVID issues. The collaborative includes post-COVID clinics across the US and is led by a group of co-chairs from different medical disciplines. The collaborative's clinical guidance statements are being released on a rolling basis, with current work focusing on cognitive impairment and cardiac-related issues. The AAPMNR has also released a long COVID dashboard that estimates the number of Americans experiencing long COVID symptoms at the county, state, and national level. The webinar also featured authors from the collaborative who discussed the assessment and treatment of fatigue in PASC patients. The guidance statements emphasize the importance of recognizing and diagnosing fatigue, analyzing presentation and assessment, and providing individualized treatment plans, including energy conservation strategies, dietary recommendations, and referrals to specialists as needed. The webinar highlighted the need for ongoing research and emphasized the importance of addressing health equity issues and social determinants of health in the care of long COVID patients.
Keywords
long COVID
comprehensive national plan
equitable access to care
multidisciplinary PASC collaborative
clinical guidance statements
cognitive impairment
cardiac-related issues
long COVID dashboard
fatigue in PASC patients
health equity issues
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