COVID-19 'long haulers' need dedicated clinics, experts say

Sad young woman by rainy window
Sad young woman by rainy window

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Editor's Note: This story was updated on Mar 23 to note that the exact number of US long-haul cases is not known. The original version incorrectly stated it was 28 million.

The United States should create multispecialty COVID-19 clinics dedicated to treating patients still experiencing serious multiorgan effects of infection well after recovery from acute illness, say the authors of a comprehensive review of literature on so-called coronavirus "long-haulers" published yesterday in Nature Medicine.

The exact number of US long-haul COVID-19 cases is unknown, but the researchers said that many patients struggle in silence or become frustrated when their doctors don't consider that their symptoms could be related to their previous infection.

Chest pain, fatigue, shortness of breath

The review, led by researchers at New York-Presbyterian/Columbia University Irving Medical Center, found that the cell damage, inflammatory immune response, abnormal blood clotting, and other complications of acute COVID-19 infection can leave in their wake long-term symptoms such as chest pain, shortness of breath, "brain fog," fatigue, joint pain, and posttraumatic stress disorder, all of which can compromise quality of life.

The researchers detailed literature from the United States, Europe, and China on high percentages of long-haulers, or those with chronic or post–COVID-19 syndrome, who often have debilitating symptoms for more than 3 months. COVID-19 has been associated with diabetes, strokes, heart rhythm abnormalities, blood clots in the lungs, and other complications.

For example, an observational study of 488 COVID-19 patients released from Michigan hospitals after 60 days who completed a phone survey found that 32.6% had lingering symptoms, including 18.9% who reported new or worsening symptoms. The most common issues were shortness of breath while walking up stairs (22.9%), cough (15.4%), and loss of smell or taste (13.1%).

Similarly, 87.4% of 143 COVID-19 patients released from a hospital in Italy reported persistent symptoms, including fatigue (53.1%), shortness of breath (43.4%), joint pain (27.3%), and chest pain (21.7%), with 55% still experiencing at least three symptoms a mean of 60 days after symptom onset.

And a study from France of 150 survivors of noncritical COVID-19 found that two-thirds reported persistent symptoms at 60 days follow-up, with one-third saying they felt worse than they did when their acute coronavirus symptoms began.

In China, 6-month post-acute follow-up of 1,733 COVID-19 patients found at least one lingering symptom in 76%, with fatigue/muscle weakness in 63%, sleep problems in 26%, and anxiety/depression in 23%. About half of 349 patients who underwent high-resolution chest computed tomography showed at least one abnormal pattern.

All COVID patients vulnerable

While long-haul syndrome often occurs in people with underlying health problems, it also affects previously healthy people, senior study author Elaine Wan, MD, said in a Columbia University news release.

"I have seen young patients, weeks even months after COVID-19 infection, and they've suddenly developed new onset of heart racing, palpitations, and chronic fatigue," she said, adding that other patients report new chest discomfort or difficulty with decision making, memory, and concentration.

Wan said that COVID-19 is the first infectious disease that she has seen that affects so many organs. "It's changed my clinical practice," she said. "No matter what the patient comes in for, I now ask if they ever had COVID-19 infection. It changes the possible range of diagnoses."

Lead author Ani Nalbandian, MD, said in the release that she encourages potential long-haulers to insist on appropriate recognition and treatment. "Get in touch with your doctors even if you're not sure if your symptoms are lingering from your COVID infection," she said. "The situation is still fluid, and we're learning more every month."

Physician cooperation with patient advocacy groups, sharing of data, and participation in longitudinal clinical trials are also essential, the authors said in the study. "Necessary active and future research include the identification and characterization of key clinical, serological, imaging and epidemiologic features of COVID-19 in the acute, subacute, and chronic phases of disease, which will help us to better understand the natural history and pathophysiology of this new disease entity," they wrote. 

Establishing long-haul clinics

The researchers called for the creation of dedicated COVID-19 clinics, similar to those popping up in Italy, and prioritization of those at high-risk for long-term symptoms, such as those of advanced age or with severe acute infection requiring intensive care, pre-existing respiratory illness, obesity, diabetes, high blood pressure, chronic cardiovascular disease, chronic kidney disease, organ transplant, or active cancer.

"It is clear that care for patients with COVID-19 does not conclude at the time of hospital discharge, and interdisciplinary cooperation is needed for comprehensive care of these patients in the outpatient setting," they wrote.

One academic medical center, the Brigham Lung Center, recently opened the COVID Recovery Center for these patients, according to a Dana-Farber Cancer Institute news release.

But doing so has been difficult because physicians are still attending to new coronavirus patients, Nalbandian said in the Columbia release. "Clinics could prioritize follow-up care for those at high risk for post-acute COVID-19 and those with the highest burden of persistent symptoms," she said.

See also:

Jan 20 CIDRAP News story "Patients, clinicians seek answers to the mystery of 'Long COVID' "

Jan 28 CIDRAP News story "Lingering lung, physical, mental symptoms 4 months after COVID-19"

Mar 18 CIDRAP News story "Half of hospital COVID survivors note symptoms 4 months on"

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