How Atlantic Health heals symptoms, stigma of long COVID-19: 2 physicians weigh in

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The World Health Organization released an official definition on post COVID-19 condition on Oct. 6, but clinicians have been treating patients with symptoms since the onset of the pandemic — including stigma surrounding the legitimacy of the condition. 

Fred Cerrone, MD, of Pulmonary and Allergy Associates, part of Atlantic Health System’s Atlantic Medical Group in Morristown, N.J., and David Sousa, MD, also of Pulmonary and Allergy Associates, spoke with Becker's about their experiences treating patients with post COVID-19 condition one year in. Both Dr. Cerrone and Dr. Sousa have been leading Atlantic Health's COVID Recovery Center since its inception.

Editor's note: Responses have been lightly edited for length and clarity.

Question: How many patients with long COVID-19 have you treated at the center since its inception?

Dr. Fred Cerrone: Seven hundred-seventeen at last count.

Q: Are there any inpatient options or is it all outpatient?

FC: It is presently all outpatient treatment.

Q: What are the most common symptoms observed in patients?

FC: I mean it's what you usually hear right, the dyspnea, the shortness of breath, the palpitations, the fatigue, the brain fog. It follows the whole range, right? Those are the top four probably, but then you get into everything else you hear about. Everything from headaches to gastrointestinal symptoms to hair loss to skin changes to what have you. But the top is definitely the breathing, the palpitations, the brain fog and the fatigue.

Dr. David Sousa: We're starting to see certain buckets of patients, and they tend to fit into certain phenotypes and as appropriately were for direct hit now as we're trying to describe the population. But if you look at literature and you look at what we've been doing, exercise intolerance and fatigue, brain fog and shortness of breath, are some of the highest things that we see. But like regular COVID, long COVID is a heterogeneous disease, and as Fred mentioned, I think last we looked Lancet II clinical medicine described over 200 symptoms in 10 different organ systems. So, we do pretty robust systematic screening to try to figure out what people particularly need, because although those are the most common symptoms, everyone experiences it differently.

Q: Going back to what you had mentioned about skin changes, what exactly does that entail?

FC: Some people come in, as David was saying, trying to put them in buckets, some of them tend to have rashes. The big one is to having those kinds of things like having some type of rash with their other symptoms.

Q: How do symptoms differ among variants, if at all? 

DS: The symptomatology has been pretty much the same across the board so far. Although, you know, there's a lag. We see people after four weeks of symptoms, right, because we're doing, quote, long COVID or post COVID conditions, which is probably the more correct definition now. So, what we may see in three or six months may be different but right now the symptomatology appears to be the same.

Q: Of the number of patients that you've treated, do you know how many are vaccinated? 

DS: Not yet. Part of it is that a big part of our population got COVID before there was even a vaccine available. So we don't know the proportion yet of people who've had an available vaccine, and then got COVID and then got vaccinated. So we don't have those numbers.

FC: Remember a lot of our patients too, especially the ones that are beginning, they may have tested negative or had a false positive test, we don't know. So we just treated them if they had, look like COVID, talk like COVID, be treated as COVID. We do have a lot of patients, you'll see, as statistics come out that they might not have tested positive, but they had COVID. 

Q: How is the center helping long COVID-19 patients address any continuing health obstacles/challenges? 

FC: When we set out to do this, it was always helping the patient with the more patient-centered holistic approach, making sure that someone was looking at the whole patient, not just individual symptoms — where you know bringing them in, getting them seen, having the evaluation, getting them the appropriate care that we can get them. And then kind of learning over time, different things that we can do to help them. A lot of the fatigue we've learned over the past year to year and a half is sleep issues. We could actually help those kind of sleep issues, and help them recover. So, I think as David mentioned, they're all heterogeneous, realizing they're all individuals. You just can't lump them together, but taking them as an individual, assessing them and then trying to get them where they need to go.

DS: And if I were going to add to that, in what we do in our center. And what really, this is going to be a nationwide problem. The most important thing I think if you're a primary care provider or you're running a center like ours, is that you have to believe the patients. There's a lot of stigma. There's a lot of people who, whether they're doctors and they don't believe their symptoms. Or they don't think that it may be long COVID, and they don't get help. So, a lot of this is eliminating the stigma, believing your symptoms and then creating an individualized plan based on your symptoms. WHO just came out with a real definition for this post COVID condition, so I think that goes a long way to legitimizing this, and you know a lot of times people get brushed off, and their symptoms are real.

FC: You think it wouldn't still happen, but it still happens. Again, that was another one of our initial goals to tell the patients, "Look you have somewhere to go." It's still a learning process, obviously there is no answer. At least we can help them and help them get back to some type of daily functioning.

Q: How has the center or its long COVID-19 treatment protocols changed since its inception? 

DS: I think that we're constantly changing because the data is constantly changing. And I think that some of the frustration you see out among patients and people when they debate this is that the goal line keeps moving. So you have to adapt. I think initially we were seeing people for a primarily pulmonary issue because we're pulmonologists, but we've really shifted to acting almost like internal medicine where we do a multi system screen. We don't act as a primary organ specific doctor, and really try to broaden what we're looking at and I think that that's probably where we changed the most. We've gone from, you know, looking at a few systems to really looking at the whole patient head to toe.

FC: But I think one of the things we have learned, I mean besides these buckets, is that you can't rush the patients back. We work with them on "Look, these are steps here, to getting back to where you want to be." And what we learned is if they rush back too quickly to doing things or trying to do things, it's almost like a setback. And a lot of this is waxing and waning, their symptoms. We don't know. We still don't know if it's going to come back, the symptoms are going to come back. Only time's going to tell, but a lot of it is that, you know, putting down a plan with them, sitting down and outlining a plan with them about those kinds of things. 

Q: Has there been a typical amount of time treatments have taken for symptoms to improve? Or does it really depend on the person?

DS: We've focused on taking care of patients and we have a pretty robust data set. And that's one of the questions we're trying to answer, but I don't have that answer for you just yet. Our goal is to try to see if we can see if there are specific subsets and there may be different timings for each subset. Whether you're the subset of the fatigue and exercise intolerance versus someone with pulmonary issues or neurologic complications. 

Q: What mental health resources do the behavioral health specialists offer patients?

DS: It's pretty robust actually. So, what we have is our regular behavioral health services, where there's an intake screen, and they assess the patient's need. There is an ability to see a psychiatrist. One of the areas that we've had a tremendous amount of great feedback from our patients is our peer support. We have multiple peer support groups. 

FC: The peer support groups have been wonderful. Our behavioral health group has really done a great job with that. But again they do provide, also as David mentioned, the individualized attention, if needed, to patients as well. So it is really a broad spectrum of treatment.

Q: Since the term is more informal in the medical community, what do you wish more professionals knew about long COVID-19 and its long term effects? 

DS: I think that they just need to understand that it is real, that it is a legitimate condition, and you need to believe your patients. It's really important to eliminate that stigma.

FC: I totally agree with him. That is the one thing, that one message that needs to get out. We have to keep hammering. That you just have to listen to them, they're not making this up, that it is real. These are real symptoms. And that we can try to help them, and in many cases we have helped them. And there are places and resources for them to go to get help.

DS: And one more thing that may be a little controversial, but the one thing that I wish the medical community, or just, you know, the world as a whole, understand is, there's more reasons other than dying from COVID or being in the ICU to not get COVID-19. And I think it's more important than ever to really push forward on vaccination. We know that vaccinated people are 50 percent less likely to have persistent symptoms at 12 weeks. So it is an important part of this. Certainly we're available to help people with their needs for post COVID, but the vaccines are a really important part of getting through this.

 

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