“It’s heartbreaking.”
That’s how Johns Hopkins pulmonologist Emily Brigham describes her consultations with patients who continue to struggle with debilitating symptoms from COVID-19, months after their initial infection.
“Many of them had only minor COVID-19 symptoms to start, and here they are months later saying, ‘I can’t return to work. I can’t take care of my kids.’ They struggle with symptoms like intense fatigue, shortness of breath, heart palpitations and cognitive impairment. Tied to that are anxiety and depression. They are understandably very frustrated,” Brigham says.
Fortunately for these COVID-19 “long-haulers,” as they have come to be known, Brigham and fellow pulmonologist Ann Parker can connect them to a broad array of specialists to help support their recovery through JH PACT (Johns Hopkins Post-Acute COVID-19 Team), a service that both doctors launched and now co-direct with Physical Medicine and Rehabilitation colleagues, Alba Azola and Soo Kim.
Once patients’ specific needs have been identified and a treatment plan started, some receive care at home, including rehabilitation therapy and nursing visits. Others come to Johns Hopkins for services like physical, occupational and speech therapy.
“As early as March 2020, we recognized that because patients would have complex, multifactorial health needs, we would need to take a multidisciplinary approach.” – Ann Parker
Rehabilitation psychology, neuropsychology and psychiatry also provide key services to address patients’ cognitive and mental health needs. JH PACT also offers medication management in coordination with Johns Hopkins pharmacists, and COVID-19-related radiological imaging.
The idea for JH PACT came early on in the pandemic. “From decades of experience and research involving post-intensive care syndrome (PICS) — a collection of impairments in physical function, mental health and cognition that can persist for months or years after an ICU patient leaves the hospital — we expected there would be patients with COVID-19 who would be at risk for similar impairments,” says Parker. “As early as March 2020, we recognized that because patients would have complex, multifactorial health needs, we would need to take a multidisciplinary approach.”
Working closely comes easy for Brigham and Parker, who are good friends. They completed their Johns Hopkins fellowship training together and both bring important expertise to JH PACT.
JH PACT came together quickly, Brigham and Parker say, thanks to “amazing collaboration and support” from doctors, nurses and therapists from across Johns Hopkins.
Brigham is an expert in airway diseases like asthma and COPD, and she has done research examining disparate health outcomes among minority populations in an effort to improve health care equality. She also has treated patients with lingering respiratory symptoms post viral illness, and so the respiratory complications that accompany post-acute COVID-19 are not new to her. Parker’s research has focused on improving health outcomes for survivors of critical illness coming out of the ICU. In that role, she is well familiar with PICS and has developed strong working relationships with colleagues in Physical Medicine and Rehabilitation at Hopkins — specialists who are key to providing care for those with post-acute COVID-19.
“We sat down together in March, with pulmonologist Sarath Raju and Christian Merlo [pulmonary director of outpatient clinical operations], and said, ‘We need a service. Let’s hit the ground running with streamlined care for patients who will inevitably be coming to us post COVID-19,’” recalls Brigham. JH PACT came together quickly, Brigham and Parker say, thanks to “amazing collaboration and support” from doctors, nurses and therapists from across Johns Hopkins, including trainees like Jacqueline O’Toole and Sandra Zaeh (senior Pulmonary fellows).
In the midst of it all, Parker gave birth to her third son in May. “From March until he was born, I shifted from working directly with patients in the ICU. Instead, I was able to put systems in place to get JH PACT up and started,” she says.
“Ours was one of the first post-COVID-19 services in the nation and we were very proud we were able to do this. It really speaks to the breadth and depth of expertise here at Johns Hopkins.” – Emily Brigham
“Ours was one of the first post-COVID-19 services in the nation and we were very proud we were able to do this. It really speaks to the breadth and depth of expertise here at Johns Hopkins,” says Brigham.
Because COVID-19 long-haulers come in with such a variety of different symptoms, involving all of the body’s major organ systems, she says, it’s critical to have access to an array of subspecialists: cardiologists, nephrologists, infectious disease specialists, hematologists, psychiatrists and more.
“With JH PACT, when I see a patient with all of these different systems, I can connect them to the appropriate care in a way that is relatively fast,” says Brigham. “And because our specialists are seeing many individuals with similar concerns, they are starting to see patterns, and they feedback to us.”
That feedback is an important element of JH PACT, notes Parker. “From the very beginning, we have been completing our clinical assessments in a very deliberate and standardized way, so that we can begin to recognize patterns and compare outcomes — across Johns Hopkins, the United States and internationally — with the ultimate goal of improving care for patients with post-acute sequelae of COVID-19 (PASC).”
Toward that end, there are efforts well-underway to launch a Johns Hopkins-wide data registry that will hold health information from the electronic medical records of patients who have been treated for COVID-19. The registry will offer a treasure trove of data that Johns Hopkins researchers can tap as they investigate new protocols and treatments for COVID-19 and post-acute COVID-19. There are also plans to establish a biorepository, with samples of body fluids and tissue from patients with COVID-19. Brigham and Parker believe such a biobank will prove crucial for future research efforts. “Having the availability of specimens will allow us to recognize patterns, ask questions, and rapidly answer those questions,” says Brigham.
These efforts have taken on increased urgency as evidence shows that a notable percentage of COVID-19 survivors (some estimate as high as one-third) continue to be plagued with life-altering symptoms long after they recover from acute illness.
“Sitting down with these patients, seeing their pain and frustration, and not being able to tell them when their symptoms will go away…it only drives us to come up with strategies as quickly as possible,” says Brigham.
