A new Northwestern Medicine study invited users to track their long COVID-19 symptoms over time through an interactive mobile app, which curbed tracking struggles for patients.

“Your doctor is not calling you every day to say, ‘So, how’s your brain fog? How is your headache? How is your dizziness?’” co-author Feinberg Prof. Dr. Igor Koralnik said.

A Jan. 12 study published in the journal, BMC Neurology, analyzed recovery trends in 63 “improvers” and “non-improvers” over three months.

Long COVID is a condition that leaves patients with ongoing or new symptoms for at least three months after their initial SARS-CoV-2 infection. According to the World Health Organization, about six in 100 people infected with COVID-19 develop long COVID conditions. Symptoms include fatigue, pains, headaches and difficulty breathing.

The study found that about 43% of patients saw their symptoms improved, while roughly 57% reported no improvement. According to the study, participants who reported improvement experienced more fluctuations in their symptoms. Koralnik said this reveals how even the road to recovery is not a straight one.

“It looks a bit like a Jackson Pollock painting with a lot of ups and downs,” Koralnik said. “Basically, we saw that while the improvers improved by their own subjective feeling, they had a lot of ups and downs, so a lot of improvement and relapse and getting better and worse.”

The study also revealed women were less likely to recover than men and that those who improved tended to show better processing speed and less sleep disturbance.

Korlanik started the NM Neuro COVID-19 Clinic in May 2020. From its opening, the clinic was booked in advance, and physicians could only see new patients.

“That was the ‘aha!’ moment for me because I understood that was going to be a disease with a lot of fluctuations and that we needed something to track them more than a visit every three months,” Koralnik said.

Shreyas Bharadwaj (Feinberg ’21), who was a student at the time, reached out to Koralnik, hoping to work on a project under him. 

Bharadwaj helped build the initial app concept and said the idea was to help people track their recovery and observe data about their symptoms using technology everyone has at home.

Researchers wanted patients to have a tracker so they could see how symptoms evolved over time, especially because treatment is largely supportive care, which can be frustrating.

“This app served as a tracker so they could see these symptoms that started out so bad like two weeks ago are not as bad now, so even though I still feel them and they’re bothering me, this positive trend can be somewhat therapeutic,” Bharadwaj said. 

Bharadwaj added that much of the early COVID response focused on pulmonary complications, while no neurological effects received less attention. 

According to Koralnik, the app captures what occasional visits cannot: consistent tracking over time. He said the app was a good way for patients to inform physicians of what their symptoms looked like in the long run.

Feinberg fourth-year Grace Lank joined the project after the app was created. Through her Area of Scholarly Concentration, she helped take the study from design to publication.

She said researchers focused on stopping the spread and treating acute illness during the pandemic, while the long-term implications are only being started to be looked at.

“There’s still so many unanswered questions,” Lank said. “Long COVID can last years from when you were infected with the virus. It’s not like it’s going away anytime soon. It’s important to understand how patients recover from that and the mechanisms of the disease itself.”

Lank said it was important for patients to see objective data showing whether they were recovering, especially on days they didn’t feel well, which “encouraged and empowered” them.

The app helped patients see their progress over time rather than rely on “moment-to-moment” feelings, according to Lank.

“It was really impactful as I was speaking with patients to see how it impacted them on a day-to-day basis,” Lank said. “The amount of brain fog and fatigue that they experienced was much more prominent than I initially thought. Also, it’s a long journey that they go through. It’s tumultuous.”

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