Nine months into the pandemic, it’s become clear that the effects of the disease caused by SARS-CoV-2 can last beyond the acute illness. Among COVID-19 patients 18 to 35 years old who were previously in good health, as many as 20% experience prolonged symptoms, according to the World Health Organization. Complaints among so-called long-haulers include fatigue, shortness of breath, “brain fog” and depression. For patients whose illnesses required ICU care, post-intensive care syndrome (PICS) is an ongoing concern, particularly for those who experienced acute respiratory distress syndrome (ARDS).

Several hospitals have created post-COVID rehabilitation teams to help COVID-19 patients who deal with symptoms after their initial illness, whether for those post-hospitalization or patients whose illness was mild but who present with new symptoms in the following months. Lekshmi Santhosh, a pulmonary medicine and critical care specialist and the physician faculty lead for the UCSF Post-COVID OPTIMAL Clinic, says they’re seeing a similar set of symptoms to those described in single-center studies published in JAMA and other journals. “Many patients have persistent dyspnea, fatigue and chest pain. A significant subset also have neurological symptoms, such as difficulty concentrating, or ‘brain fog,’ neuropathy and anosmia,” she says. Patients are evaluated for physical, pulmonary and cognitive function, as well as mental health and psychiatric symptoms.

There’s still much to be learned about treatment for post-COVID symptoms. The National Institutes of Health hosted a “Post-Acute Sequelae of COVID-19” workshop in early December, which Santhosh says raised several important questions for further study. For now, her clinic leans on their knowledge of PICS while recognizing there are significant differences between it and the treatment of COVID-19 survivors. “Most of the trials right now are focused on acute COVID-19 and very few trials on treatments for symptoms persisting after COVID,” Santhosh says. “I am intrigued to see [the] results of colleagues at UCSF and other institutions regarding persistent neurological symptoms and potential treatment modalities.”

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At USCF Post-COVID OPTIMAL Clinic, patients with breathing issues or chest pain are screened for symptoms that might indicate deep vein thrombosis or pulmonary embolism. Otherwise, they’re reassured breathing issues are normal at their one-month follow-up visit.  Preliminary findings presented at the European Respiratory Society (ERS) International Congress 2020 followed 86 hospitalized coronavirus patients. At six weeks after discharge, lung damage and fluid accumulation were present in 88% of patients. After 12 weeks, that dropped to 56%.

If dyspnea or chest pain lingers for three months, “we may do PFTs, echocardiograms, or chest imaging, depending on these results,” Santhosh says. Patients with preexisting lung conditions are sent to pulmonary rehab.

Avoiding anchoring bias is key, Santhosh says. “All people who present to your clinics with COVID do not necessarily have complications of COVID. We have seen missed diagnosis of malignancies and autoimmune conditions that people erroneously attributed to ‘just post-COVID.’”

Aaron Bunnell, assistant professor of rehabilitation medicine at the University of Washington School of Medicine, says two of the few medications his clinic has been prescribing for neuropathic pain are gabapentin or duloxetine. He’s starting to consider whether medications like amantadine or methylphenidate might be useful for cognitive symptoms, particularly what’s been referred to as brain fog. “I think we’re going to do a little trial to see if we can determine whether there’s some evidence for that,” he says.

Otherwise, much of the treatment focuses on physical therapy and providing adaptive solutions for mobility, Bunnell says. Having these central post-COVID hubs seems to be useful for patients and doctors alike. Santhosh says a multidisciplinary team focused on post-COVID patients means fewer things slip through the cracks — for example, her clinic’s team of pharmacists has been able to catch medications that had been inappropriately continued after discharge. Bunnell says his team often becomes a specialized information center for patients — they field a lot of lingering questions from patients about why they’re still feeling so rough after the initial illness; they might not have otherwise had dedicated healthcare professionals to consult.

A few symptoms have stood out in particular at UW Medicine’s post-COVID telehealth clinic. “By far, the number one is decreased endurance,” Bunnell says. Respiratory issues were another major concern, and several patients were struggling with self-care. “I think around 40% of our patients under 60 had a new ADL deficit,” he says, referring to the activities of daily living, the skills necessary to independently care for oneself. “It doesn’t necessarily mean that they were ‘total assist,’ but maybe they needed some assistance that they didn’t need before. And then I think concomitant with that is the mental health struggles. We are seeing a fair bit of depression, and in the ICU patients, some PTSD as well.”

Although clinicians have been able to draw on their knowledge of PICS and other conditions, like ARDS, sepsis, and other critical illnesses, post-COVID symptoms have come with their own surprises.       

“I have been surprised by the huge spectrum of recovery. Some patients who were in the ICU proned, paralyzed, [or] on vasopressors return to clinic relatively unscathed, while others who were never hospitalized have severe, debilitating, prolonged symptoms,” Santhosh says.

But the relevance of COVID-19 clinics could outlive the pandemic. “I think the multidisciplinary approach is promising for these patients,” Bunnell says, even beyond this initial wave of cases.          “Eventually this pandemic is going to end, but that clinic can also have a life for your post-ICU patients going forward.”