Emerging trends among COVID-19 long-haulers: 6 physicians weigh in

Early research estimates have shown anywhere between 10 percent to 30 percent of people with COVID-19 go on to become long-haulers, or those who experience persistent symptoms weeks or months after the infection has cleared. With more than 31.2 million COVID-19 cases reported in the U.S., and with the pandemic still raging, the number of people who are or will experience long-term effects presents health systems a profound challenge. 

In response to the growing problem, many hospitals and health systems have launched COVID-19 recovery programs, or post-COVID clinics, to support patients experiencing lasting effects. 

However, there are plenty of perplexities surrounding long COVID-19. In February, the National Institutes of Health announced it is leading a major research program aimed at identifying what causes prolonged symptoms and developing methods to treat or prevent the lasting problems. 

In the meantime, Becker's spoke to and collected responses from the following clinical leaders about early trends they've noticed at their organization's post-COVID-19 programs: 

-Fred Cerrone, MD, co-director of Morristown, N.J.-based Atlantic Health System's COVID-19 recovery center

-Rasika Karnik, MD, internist at UChicago Medicine's clinic

-Maureen Lyons, MD, director of St. Louis-based Washington University School of Medicine's clinic

-Jillian Oft, MD, infectious disease specialist at Los Angeles-based Cedars Sinai's program

-Turner Overton, MD, director of Birmingham, Ala.-based UAB Medicine's program

-Monnie Wasse, MD, director of Chicago-based Rush University Medical Center's clinic 

Four emerging trends:

1. Most patients did not require hospitalization. "Over two-thirds of our patients did not require hospitalization, indicating that they had relatively mild acute illness, but despite that, may have severe post-COVID-19 symptoms," Dr. Oft said of what she's noticed about the patients coming through Cedars-Sinai's COVID-19 recovery program. 

Dr. Wasse, Dr. Cerrone and Dr. Lyons noted the same. "They weren't super sick, but they've had residual symptoms that have lasted for months and aren't able to get rid of them," Dr. Wasse said. 

The observation has also been reported in some recent research. A study published March 5 in the preprint server medRxiv found that of 1,407 COVID-19 patients who did not require hospitalization, 27 percent were experiencing lingering symptoms more than 60 days after their initial infection. Of those experiencing lingering symptoms, nearly a third were asymptomatic through the 10 days after a COVID-19 diagnosis. 

A separate study published Feb. 19 in JAMA Network Open reported that out of 150 outpatients who initially had a mild COVID-19 infection, about one-third reported persistent symptoms as long as nine months after the illness. 

2. The majority of patients are women. At UAB's post-COVID-19 program, about 70 percent of patients have been women, Dr. Overton told Becker's. "There's some data in the literature [that shows] women are disproportionately affected by these longer [term] symptoms than men, but women are also more likely to seek care," he added. "So there's maybe some bias there, but I do think there does seem to be a preponderance of women." 

In the Chicago area, Dr. Karnik and Dr. Wasse have observed the same at UChicago Medicine and Rush, respectively. 

While she's seen both men and women, Dr. Karnik said there's been a mild trend of more women seeking care at UChicago's recovery clinic. 

"It's really hard to know if there is an actual causation, right? Between if you're a woman you're going to feel more side effects versus if there are any other confounding factors," Dr. Karnik explained. "Maybe certain people are just more vocal presenting their symptoms… it's hard to really tease out." 

Some experts have hypotheiszed that sex-based differences in the body's immune respnse are behind the higher prevalence of women experiencing prolonged symptoms. "It may be that the immune response is different in women, so you then have a continued inflammatory reaction that then leads to a higher likelihood of having long COVID-19" said Dr. Chris Brightling, respiratory medicine professor at the University of Leicester in the U.K., and chief investigator of the country's national research effort on the long term effects of COVID-19. 

3. There are long-haulers of all ages. While older people with COVID-19 were more likely to require hospitalization during earlier stages of the pandemic, long-haulers range in age. At Rush, there are two age ranges of patients predominantly seen at the clinic — those aged 30 to 40 and those over the age of 65, Dr. Wasse said. 

Dr. Cerrone and Dr. Oft also referenced that a wider age range of people are experiencing persistent symptoms.  

Early data has indicated that an increasing number of children develop long-term problems. While formal data on the condition is still incomplete, Britain's Office for National Statistics in February released figures that showed about 13 percent of children under 11 who contract COVID-19 still had at least one symptom after five weeks. That figure jumped to 15 percent among children aged 12-16. 

4. There are a range of lingering symptoms. "It is definitely not a one-size-fits-all condition," Dr. Oft said. However, there are a number of common symptoms patients are presenting with, some of which are similar to those experienced during acute COVID-19 illness, and others that are new. 

Nearly all of the long COVID-19 clinic physicians Becker's spoke to mentioned neurocognitive symptoms such as brain fog, impaired concentration, fatigue and headaches. Insomnia and sleep disturbances are also common, Dr. Lyons and Dr. Oft said. 

Pulmonary symptoms including shortness of breath and chronic cough have been just as common. At Atlantic's long COVID-19 program, Dr. Cerrone said there's been a subset of patients whose oxygen levels drop despite related testing not indicating any problems. "All the testing is negative, but when we walk them, after about four or five minutes their oxygen levels just drop." 

Four of the six COVID-19 recovery clinic leaders also pointed out heart palpitations. 

Finally, depression and anxiety have been prominent. 

"We have found that patients benefit from a multi-disciplinary approach to assess individual symptoms," Dr. Oft said of Cedars-Sinai's recovery program. "We compose a treatment plan that may incorporate medications and/or therapy to improve function while recovery from COVID-19 continues."


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