Over the past 12 years, neuropsychologist Tracy Vannorsdall has counseled scores of patients with mental and emotional health issues associated with cancer, and has published her research widely. That work continues, but since the pandemic began in March of 2020, her focus has turned to the psychological impact of COVID-19 on its survivors — a topic for which “studies are only just beginning to emerge,” she says.

Vannorsdall is part of the Johns Hopkins Post-Acute COVID-19 Team (JH PACT), a multidisciplinary group of experts who began working together and chronicling data on April 7, 2020, with the first admission of a patient diagnosed with COVID-19 to The Johns Hopkins Hospital’s intensive care unit (ICU). By the end of 2020, studies began showing that following a COVID-19 hospitalization, as many as half of patients reported symptoms of psychiatric distress such as anxiety, depression, trauma-related distress and/or insomnia.

Johns Hopkins Medicine’s multidisciplinary COVID-19 survivors’ ambulatory clinic is among the first such units in the U.S., notes Vannorsdall, who has seen over 200 patients for cognitive assessments through the program. A description of the team’s collaborative work was published in the April 2021 issue of The American Journal of Medicine. 

Vannorsdall reiterates the importance of supporting COVID-19 survivors in ambulatory settings while capturing data about their health in real time. During a recent conversation, Vannorsdall shared her take on these efforts.

Would you please describe your work with JH PACT and how it has evolved since the start of the pandemic?

Early on, there were discussions about changes in patients with COVID-19 that extended to cognitive and mental health. The Department of Psychiatry worked together to capture data through a clinical battery of tests. Then, we created triage approaches and began referring patients to specialists. At weekly multidisciplinary team meetings, we talked about patients with COVID-19 suffering from lingering symptoms, including cognitive and psychological impairment. If triage showed that patients needed psychotherapy, further treatment of cognitive dysfunction, or to address sleep difficulties, we made appropriate referrals.

Why do these efforts matter?

I think it reflects how committed we are to staying on top of developments and expanding knowledge. This is a new pandemic, but we were able to hypothesize about the potential cognitive and mental health consequences of COVID-19 based on what we know about those outcomes in patients requiring ICU stays for other conditions. This knowledge builds on a number of important studies by Dale Needham, medical director of the Critical Care Physical Medicine & Rehabilitation Program. That work may help to improve outcomes for patients in the ICU. But we’re also taking a broader view of disability — looking at patients who did not require an ICU stay and examining their functioning several months after their acute illness. In addition, we’re keeping an eye on the pandemic with respect to the representation of minority groups in COVID-19 research. It is appreciated that racial and ethnic minority groups are disproportionately impacted by the pandemic and may be at higher risk of poor clinical outcomes, yet little data exist on long-term cognitive and psychiatric functioning in these groups. The diversity of our sample is an important piece: It’s more representative than many others and will allow us to understand the full impact of COVID-19 in traditionally underrepresented groups. There was some diversity in studies performed in China and Europe, but they certainly don’t enjoy the level of diversity we have in Baltimore.

What has surprised you about your findings?

The severity of neuropsychological symptoms remains high. When we looked at data from our first 82 patients, we discovered that more than two-thirds of them are producing moderately low to very low scores on tests of cognition. We’re seeing deficits in processing speed, language, learning and memory. Patients with pulmonary issues often talk about the emotional changes they experience. We’ve learned that about three-quarters of those diagnosed with COVID-19 say they are still feeling negative effects on their emotional well-being four months after their initial diagnosis.

Describe how you help people adjust to the neuropsychological impact of their COVID-19 experiences and treatment.

We want people to begin a gradual return to their regular activities following their illness, as this is important for mental health. However, we need to be creative in helping them structure a routine to get them back on their feet, given changes in the way we now work and socialize due to the pandemic and accounting for the cognitive changes they may have experienced. Some patients may be struggling. We encourage them to go out for fresh air, exercise and socialize safely. For those reluctant to come back for appointments in person, telemedicine has been a way to help provide neuropsychological care in a more feasible way. When access to technology poses a problem, we’re still seeing patients in the clinic safely, following all the precautions. We remain flexible in meeting patients where they are. 

What are the most important takeaways from the JH PACT experience?

Four months after diagnosis, many patients continue to require pulmonary care and experience cognitive difficulties, as well as psychological distress and other issues. So, we need to continue having a multidisciplinary approach that addresses pulmonary issues, pain, stamina, emotional distress and cognitive problems. Clinical support and interventions help — phone calls, educating patients about their skills and mood, sleep center referrals, treatment for substance use disorders, and following a healthy diet and getting exercise. All these things help to improve mental health.

A key consideration has been providing ongoing care to uninsured and underinsured patients and collaborating with language translation services.

Patients may contract COVID-19 at difficult times during their lives. Some have been diagnosed with breast cancer or other health conditions; others are caregivers themselves, and others are experiencing homelessness and living with loved ones. Many of these patients feel guilty and/or fear they will give the virus to family members. The care they receive through the PACT clinic allows us to identify those additional stressors and provide appropriate resources that may extend beyond the person’s COVID-19 diagnosis and care. One theme that has come through from the beginning is gratitude.

Many of our patients appreciate that they survived and recovered from an acute illness and express a deep appreciation for the care they have received.

What are the next steps, and how do you envision the future?

We are busy writing grants to examine cognitive and mental health outcomes following COVID-19. There’s quite a bit of variability in how patients are faring, and we need to better understand the risk factors for poor neuropsychological outcomes as well as best treatment strategies. I’m feeling more hopeful as people are getting vaccinated, and we have fewer people in the ICU. Finally, our continuous efforts to prevent people from becoming sick with COVID-19 in the first place mean we will see a reduction in psychological issues.

Learn more about the Johns Hopkins Post-Acute COVID-19 Team.