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‘For me it was very beautiful and very powerful’

By Julie Appleby 
 Clarence Troutman survived a two-month hospital stay with COVID-19, then went home in early June. But he's far from over the disease, still suffering from limited endurance, shortness of breath and hands that can be stiff and swollen.
 "Before COVID, I was a 59-year-old, relatively healthy man," said the broadband technician from Denver. "If I had to say where I'm at now, I'd say about 50% of where I was, but when I first went home, I was at 20%."
 He credits much of his progress to the "motivation and education" gleaned from a new program for post-COVID-19 patients at the University of Colorado, one of a small but growing number of clinics aimed at treating and studying those who have had the unpredictable coronavirus.
 As the election nears, much attention is focused on daily infection numbers or the climbing death toll, but another measure matters: Patients who survive but continue to wrestle with a range of physical or mental effects, including lung damage, heart or neurological concerns, anxiety and depression.
 "We need to think about how we're going to provide care for patients who may be recovering for years after the virus," said Dr. Sarah Jolley, a pulmonologist with UCHealth University of Colorado Hospital and director of UCHealth's Post-Covid Clinic, where Troutman is seen.
 That need has jump-started post-COVID-19 clinics, which bring together a range of specialists into a one-stop shop.
 One of the first and largest such clinics is at Mount Sinai in New York City, but programs have also launched at the University of California, San Francisco, Stanford University Medical Center and the University of Pennsylvania. The Cleveland Clinic plans to open one early next year. And it's not just academic medical centers: St. John's Well Child and Family Center, part of a network of community clinics in South Central Los Angeles, said this month it aims to test thousands of its patients who were diagnosed with COVID-19 since March for long-term effects.
 The general idea is to bring together medical professionals across a broad spectrum, including physicians who specialize in lung disorders, heart issues and brain and spinal cord problems. Mental health specialists are also involved, along with social workers and pharmacists. Many of the centers also do research studies, aiming to better understand why the virus hits certain patients so hard.
 "Some of our patients, even those on a ventilator on death's door, will come out remarkably unscathed," said Dr. Lekshmi Santhosh, an assistant professor of pulmonary critical care and a leader of the post-COVID-19 program at UC-San Francisco, called the OPTIMAL clinic. "Others, even those who were never hospitalized, have disabling fatigue, ongoing chest pain and shortness of breath, and there's a whole spectrum in between."
 It's too early to know how long the persistent medical effects and symptoms will linger, or to make accurate estimates on the percentage of patients affected.
 Some early studies are sobering. An Austrian report released this month found that 76 of the first 86 patients studied had evidence of lung damage six weeks after hospital discharge, but that dropped to 48 patients at 12 weeks.
 Some researchers and clinics say about 10% of U.S. COVID-19 patients they see may have longer-running effects, said Dr. Zijian Chen, medical director of the Center for Post-COVID Care at Mount Sinai, which has enrolled 400 patients so far.
 If that estimate is correct _ and Chen emphasized that more research is needed to make sure _ it translates to patients entering the medical system in droves, often with multiple issues.
 How health systems and insurers respond will be key, he said. More than 6.5 million U.S. residents have tested positive for the disease. If fewer than 10% _ say 500,000 _ already have long-lasting symptoms, "that number is staggering," Chen said. "How much medical care will be needed for that?"
 Though startup costs could be a hurdle, the clinics themselves may eventually draw much-needed revenue to medical centers by attracting patients, many of whom have insurance to cover some or all of the cost of repeated visits.
 Chen at Mount Sinai said the specialized centers can help lower health spending by providing more cost-effective, coordinated care that avoids duplicative testing a patient might otherwise undergo.
 "We've seen patients that when they come in, they've already had four MRI or CT scans and a stack of bloodwork," he said.
 The program consolidates those earlier results and determines if any additional testing is needed. Sometimes the answer to what's causing patients' long-lasting symptoms remains elusive. One problem for patients seeking help outside of dedicated clinics is that when there is no clear cause for their condition, they may be told the symptoms are imagined.
 "I believe in the patients," said Chen.
 About half the clinic's patients have received test results showing damage, said Chen, an endocrinologist and internal medicine physician. For those patients, the clinic can develop a treatment plan. But, frustratingly, the other half have inconclusive test results yet exhibit a range of symptoms.
 "That makes it more difficult to treat," said Chen.
 Experts see parallels to a push in the past decade to establish special clinics to treat patients released from ICU wards, who may have problems related to long-term bed rest or the delirium many experience while hospitalized. Some of the current post-COVID-19 clinics are modeled after the post-ICU clinics or are expanded versions of them.
 The ICU Recovery Center at Vanderbilt University Medical Center, for instance, which opened in 2012, is accepting post-COVID-19 patients.
 There are about a dozen post-ICU clinics nationally, some of which are also now working with COVID-19 patients, said James Jackson, director of long-term outcomes at the Vanderbilt center. In addition, he's heard of at least another dozen post-COVID-19 centers in development.
 The centers generally do an initial assessment a few weeks after a patient is diagnosed or discharged from the hospital, often by video call. Check-in and repeat visits are scheduled every month or so after that.
 "In an ideal world, with these post-COVID-19 clinics, you can identify the patients and get them into rehab," he said. "Even if the primary thing these clinics did was to say to patients, 'This is real, it is not all in your head,'" he added, "that impact would be important."
 Financing is the largest obstacle, program proponents say. Many hospitals lost substantial revenue to canceled elective procedures during stay-at-home periods.
 "So, it's not a great time to be pitching a new activity that requires a startup subsidy," said Glenn Melnick, a professor of health economics at the University of Southern California.
 At UCSF, a select group of faculty members staff the post-COVID-19 clinics and some mental health professionals volunteer their time, said Santhosh. Mount Sinai's Chen said he was able to recruit team members and support staff from the ranks of those whose elective patient caseload had dropped.
 Jackson, at Vanderbilt, said unfortunately there's not been enough research into the cost-and-clinical effectiveness of post-ICU centers.
 "In the early days, there may have been questions about how much value does this add," he noted. "Now, the question is not so much is it a good idea, but is it feasible?"
 Right now, the post-COVID-19 centers are foremost a research effort, said Len Nichols, an economist and nonresident fellow at the Urban Institute.
 "If these guys get good at treating long-term symptoms, that's good for all of us," said Nichols. "There's not enough patients to make it a business model yet, but if they become the place to go when you get it, it could become a business model for some of the elite institutions."
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 (Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.)
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Post-COVID-19 clinics get jump-start from patients with lingering illness