Q&A: Long COVID requires specialty collaboration led by PCPs

Key takeaways:

• Long COVID is characterized by non-specific symptoms, leading to misconceptions about the condition.
• Long COVID care teams are often led by PCPs, physical medicine and rehabilitation physicians or neurologists.

Although nearly 19 million adults in the United States may have long COVID, recent research has suggested that barriers to care remain.

According to a recent JAMA Network Open study, of 36.4% of survey respondents diagnosed with COVID-19, 22.5% reported long COVID symptoms. Many of those with long COVID said they had trouble finding physicians who were knowledgeable of it.

The inconsistency and uncertainty regarding long COVID and its treatment have opened the door for misconceptions on the condition, further creating potential disruptions in proper diagnoses and care.

Vidya Sundareshan, MD, MPH, FACP, FIDSA, FAMWA, a professor of infectious diseases at Southern Illinois University School of Medicine and a COVID-19 advisor for the American Medical Women's Association, spoke with Healio about misconceptions surrounding long COVID, which specialists should be involved in long COVID care and more.

Healio: What are some misconceptions about long COVID?

Sundareshan: I've been taking care of patients with COVID and post-COVID, which is a multisystemic illness. We started a post-COVID clinic back in November of 2021 with a panel of providers from different specialties. The patients often had symptoms where more than one specialist could weigh in. In some cases, however, we were not able to clearly see those overlaps. A lot of the symptoms are not very specific. I think that’s where a lot of the misconceptions arise from. Are these symptoms truly associated with COVID? Are they serious complications from COVID? From a physician or health care provider standpoint, it can get a little difficult in terms of knowing what tests to order, what to treat, what not to and how to treat those symptoms.

Healio: How does long COVID compare with chronic Lyme? Should we avoid comparisons like this?

Sundareshan: Post-bacterial or viral infections, a lot of times, there may be an inflammatory or autoimmune response or immune dysregulation. The pathophysiology may be similar for this phenomenon with different viruses. We can therefore draw parallels in terms of trying to understand the pathophysiology of post-acute sequalae of COVID, chronic fatigue with Epstein-Barr virus or even chronic Lyme, where you see a lot of nonspecific symptoms, including neuro-cognitive symptoms like inability to concentrate, brain fog or other memory issues. So, there is definitely the symptomatology overlap, although the etiology may not always be the same for all. With newer research in patients with long COVID, we are beginning to understand that the pathophysiology may be similar but not the same. There are parallels we can draw in terms of how to treat patients or how to give support to patients who are having symptoms which are similar with different infections mentioned, that is, post-COVID, chronic fatigue syndrome from Epstein Barr virus or chronic Lyme disease.

Healio: What kind of care teams would you recommend for long COVD?

Sundareshan: I see a lot of value in having primary care physicians be primarily involved in the care of these patients because they are always the first point of care for patients when they reach out with symptoms.

I think it’s important to rule out anything serious needing urgent interventions, such as a pulmonary embolism in someone presenting with shortness of breath or myocardial infarctions or strokes due to the potential to cause vascular damage and micro thrombosis with acute and post-COVID states. You want to rule those situations out first and then referrals to a post-COVID clinic or specialist need to go out early.

We’re seeing the impact of neurological and cognitive signs from neuroinflammation and endothelial/nerve damage, how much neuro-cognitive presentation is really involved in the symptomologies with post-COVID. It’s important to get neurology involved, when available. Getting physical medicine and rehabilitation involved is extremely important because we do have people presenting with generalized weakness and fatigue that is sometimes ongoing for months and years. A lot of the symptoms can mimic things like vitamin deficiencies, insomnia, clinical depression and anxiety. These need to be diagnosed and treated with appropriate medications.

Primary care is our biggest and best referral base that we can have, and a team approach for management of these patients is very important. I cannot underestimate the value of non-pharmacological treatments like support groups and other holistic support systems that you can have in place for these patients: social work, physical therapy, occupational therapy, etc. Then there are so many health inequity issues that we have identified with patients with post-COVID, like people who are not able to get care in a timely fashion for COVID, poor access to vaccines and treatments for COVID, with economic disparities people may have a higher chance of not recognizing post-COVID symptoms. Some patients who develop post-COVID symptoms may be of an advanced age and have multiple comorbidities. They are all first seen by primary care.

Healio: What are some remaining questions about long COVID?

Sundareshan: The pathophysiology is not very clear. We still don’t understand the details of that. Broadly, we know that with post-COVID, there can be direct viral injury done to multiple organs, in the brain particularly. Now there are more data to suggest that it is from the autoimmune or the intense inflammatory response that you see as part of the viral infection.

Then regarding vascular damage and inflammation, microthrombi are formed that can cause a lot of the neurologic and cardiac symptoms that we see.

There’s definitely a lot to understand in terms of the pathophysiology, and also in terms of treatment. When we have a problem, we want a solution that is a pharmacological treatment or something that works quickly. There’s a lot of room for research and trying to come up with things that will specifically target long COVID conditions, and that will only come when we understand the pathophysiology well.

Healio: Do you have anything else to add?

Sundareshan: I want to stress that treatment of this very complicated group of patients is a multidisciplinary approach where we have internal medicine at the helm — and neurology and ENT for the vestibular and audio vestibular symptoms like loss of taste and smell. In some places, neurologists take the lead in taking care of these patients because of a large neuroscience component to the symptoms these patients present with and the pathophysiology. I think collaboration with our mental health colleagues is crucial.

We should continue to advocate for vaccinations, because we are seeing being unvaccinated increases the risk for post-COVID symptoms. And when people have COVID, there’s a medication called Paxlovid for outpatient treatment in those who are eligible, which is more than half the people who develop COVID. There’s some evidence that early treatment of COVID can decrease risk of development of post-COVID as well.

Additional information on long COVID and specific diagnostic testing for patients with long COVID can be found here.