Coronavirus 'Long Hauler' Care Model

A new COVID-19 recovery program focuses on long-term symptoms after acute illness with individualized and expedited treatment.

A New York-based medical center has established a clinical program for coronavirus "long haulers"—patients who experience symptoms for weeks or months after the acute phase of their illness.

Since the first case of COVID-19 was diagnosed in the United States, the disease has perplexed clinicians at several turns. For example, during the spring coronavirus patient surge, clinicians placed seriously ill patients on ventilators relatively quickly as they are inclined to do with other patients suffering with acute respiratory distress syndrome (ARDS). However, proning and nasal high flow therapy have emerged as better courses of treatment for many coronavirus patients who develop ARDS.

Gary Rogg, MD, an attending physician in internal medicine and co-director of the Post-COVID-19 Recovery Program at Westchester Medical Center in Valhalla, New York, says coronavirus long haulers can have a range of long-term symptoms.

• Cough
   
• Shortness of breath
   
• Constitutional symptoms such as numbness and tingling
   
• Cardiac issues
   
• Deconditioning
   
• Hair loss
   
• Anxiety and depression
   
• Brain fog: "They will understand what you are asking them and they know the answer, but it takes them a while to formulate the answer, which is very different from these people's baseline," he says.

"What became apparent through the pandemic is that COVID-19 is very different from the flu. With influenza, pretty much everyone has fever and body aches for a week or two, then it just resolves. With COVID-19, patients are having ongoing symptoms for week after week," Rogg says.

He says about 10% of Westchester Medical Center's coronavirus patients are long haulers, but the percentage could be higher. "As time goes on, that number could increase, particularly in the younger and healthier group. Those patients recover and have symptoms, but they go to work, go about their lives, and maybe have some denial hoping the symptoms will go away. So as time goes on, we will probably see more long haulers. It could go up to 15% of all coronavirus patients."

Caring for long haulers

Westchester Medical Center launched the Post-COVID-19 Recovery Program after Labor Day.

"During the first COVID-19 patient surge, I was asked to organize the coronavirus response for the medical center. One of the things we developed was a rapid response team, where we had dedicated physicians from each of several specialties. When we had hospitalized patients, they would not go through the standard mechanism for consultation—the physicians would be called directly, which provided expedited specialty care. We modeled the Post-COVID-19 Recovery Program along those lines," Rogg says.

Primary care physicians play a key role in the recovery program, he says. "What we try to do with the program is to personalize and individualize the care of these patients. We have set up a dedicated group of primary care providers who serve as a gateway."

Physicians in several specialties also are participating in the recovery program, including neurology, pulmonology, cardiology, rehabilitative medicine, and infectious disease.

Patient navigators are a unique aspect of the recovery program, Rogg says. "This program is not one-size-fits-all. It is individualized. The patient navigators are a resource and extension of the physician to expedite any issues that arise. The patient navigators schedule patients for appointments in the recovery program and they expedite specialist appointments. They are basically an appointment contact person."

The patient navigators help ensure that care is provided on a timely basis, he says. "We see patients in an expedited manner. For specialty care, we can get patients in to see a clinician within a week or two. If necessary, we can set those appointments faster."

Once a coronavirus patient is enrolled in the recovery program, the first step is an initial evaluation, Rogg says. "We look for other contributing or secondary causes of symptoms, we see what was done on the patients during the acute phase of their illness, then we refer patients for testing and for specialty evaluation. … We do a blood panel, check inflammatory markers, and conduct tests looking for secondary issues."

Some long haulers are evaluated for blood clotting, he says. "Many patients who have an issue with shortness of breath either have emboli and are given CT scans, or they have diffusion abnormalities such as scarring or inflammation in the interstitial space—the air spaces in the lungs. In the latter cases, air cannot get into the lungs adequately. For patients with diffusion abnormalities, we conduct pulmonary function testing."

For long haulers with suspected cardiac issues, echocardiograms are conducted, Rogg says.

In search of a cause

The cause of long hauler symptoms remains a mystery, but Rogg has a theory. "The thought is that COVID-19 is causing persistent changes in a person's immune system—there is an immune system-mediated process driving the long-hauler symptoms."

The course of symptoms also points to the immune system, he says. "A pattern we see with long haulers is waves of symptoms. A patient will wake up and say, 'This is the first day that I'm starting to feel better.' Then a couple of days later or a week later, their symptoms recur. We have seen that in the acute illness, too. The symptoms seem to fluctuate. The only thing that can cause that kind of fluctuation is some kind of dysregulation of the immune system."