On April 7, 2020, Johns Hopkins specialists saw the first patient in their new virtual clinic for survivors of COVID-19. Initially designed for patients discharged from the ICU with post-intensive care syndrome, the clinic evolved over the months to serve those who experience persistent post-COVID-19 symptoms, whether they were hospitalized or not.
“We created a comprehensive structure early on to encompass possible complications,” says Soo Yeon Kim, a physiatrist with a joint appointment in anesthesiology and critical care medicine and co-director of physiatry for the Johns Hopkins Post-Acute COVID-19 Team (JH PACT). “We manage any post-COVID-19 symptoms and connect patients to the appropriate providers.”
The presence of chronic symptoms after COVID-19 is being called “long COVID” or “post-COVID syndrome.” Alba Azola, co-director of physiatry for JH PACT, says patients at JH PACT are experiencing symptoms consistent with those reported in a January 2021 commentary in The Lancet. According to the article, six months after onset of COVID-19, 63% of patients reported fatigue and muscle weakness, 26% had trouble sleeping, and 23% reported anxiety or depression.
The most critical aspect of care for this patient population, says Kim, is having a team of specialists who can address each condition. Core experts in JH PACT are from the Johns Hopkins Division of Pulmonary and Critical Care Medicine, the Johns Hopkins Department of Physical Medicine and Rehabilitation and the Johns Hopkins Home Care Group, and they frequently make referrals to other specialties as needed.
Kim says the clinic was among the first of its kind in the U.S. in 2020, and medical institutions across the country approached the team for guidance on developing their own ambulatory post-COVID-19 clinics. A January 2021 statement by Kim and colleagues in the American Journal of Medicine details JH PACT’s multidisciplinary, collaborative, ambulatory framework.
Patients can qualify for JH PACT in several ways, including if they spent more than 48 hours in the ICU or were hospitalized and meet one of the following conditions: persistent respiratory symptoms, new or increased oxygen requirements at discharge, an inpatient pulmonary consultation that recommended enrollment in JH PACT, or an inpatient rehabilitation consultation with recommendations for post-discharge rehabilitation. Patients who were never hospitalized can also be referred if they have persistent, bothersome symptoms eight weeks after COVID-19 diagnosis.
“We didn’t expect to see people at JH PACT who did not go through ICU care,” says Kim. “But with COVID-19, long-term complications are not necessarily associated with the severity of the original illness.”
As of November 2020, 265 unique patients had been seen in 530 visits to JH PACT. The majority — 70% — had been in the ICU for COVID-19.
Azola says one of the goals of JH PACT is equity of ambulatory care for COVID-19 survivors. Thanks to a simple checklist that inpatient teams use to see if patients meet certain medical criteria, those who are getting discharged from a Johns Hopkins hospital after treatment for COVID-19 receive an automatic referral if eligible. As of November 2020, the breakdown of JH PACT patients was the following: 33% Black or African American, 29% Hispanic or Latino, 26% white and 6% Asian. Commercial insurance was the primary coverage for 60% of these patients, Medicare for 21%, Medicaid for 12% and self-pay for 7%.
“Underserved populations who don’t have insurance or established medical care could easily get lost if they didn’t get that referral upon discharge,” says Azola. “Some emergency funding has made it possible to connect these patients with social workers and others to ensure they get proper care after hospitalization. Some patients established a primary care physician for the first time.”
To make a referral, visit JH PACT’s Resources for Health Care Professionals.