Julia Moore Vogel, PhD, MBA: How Do We Define Long Covid Patients?

Despite growing in prevalence and burden on new patients, long Covid remains a relatively ill-defined chronic disease—determined by hundreds of signs or symptoms and oftentimes missed by both clinicians and patients until it’s well into its disease course.

In the latest episode of Lungcast, American Lung Assocation (ALA) chief medical officer Al Rizzo, MD, spoke with long Covid researcher and patient Julia Moore Vogel, PhD, MBA, program director of The Participant Center at Scripps’ All of Us Research Program, on the challenges of defining and adequately researching long Covid. Chief among hers and colleagues’ frustrations is the variety by which it can present in patients.

“There are over 200 different symptoms that folks can have, and we don’t even have well-defined subtypes,” Vogel said. “Some folks just feel a little less than how they used to be—and some folks are completely bed-bound. There’s this wide variety of presentations that makes it hard to classify what it is.”

What’s more, PCR testing infrastructure—previously a widely available resource during the COVID-19 pandemic—has been all but mitigated in the US at the conclusion of the public health emergency declaration. Long Covid patients can very well be unaware of their condition.

“Many patients with long Covid may not have even been aware they experienced the acute infection,” Vogel said. “That diagnostic piece has been a real challenge both for people who have been trying to get care—but also for clinical trials, where you only want to do trials on people who have had COVID, but you don’t want to exclude people that weren’t able to access testing when they needed it.”

Regarding long Covid diagnostics, Vogel stressed to clinicians that they avoid letting “perfect be the enemy of good.”

“Listen to the patients and what they’re telling you; learn about the disease in general and you can make a best guess of what it is,” she explained. “A lot of things in medicine are not perfect, and I think that’s the kind of situation we’re in here.”

While Vogel believes the pursuit of disease scoring systems in lieu of biomarkers or other quantitative measures are a good idea, she stressed that data sources may be currently lacking for relevant symptoms and signs of long Covid. There remains a high risk of missing patient data from those who don’t access their health care system—whether because they’re unaware of their diagnosis or are hindered by their disease enough to be physically unable to consult with a physician.

“I worry a lot about both of those things, that you’re missing pieces of the puzzle, and that we really have to be thoughtful in the research that we’re designing to make sure we’re including the people that need to benefit from the research the most,” Vogel said.

Lungcast is a monthly respiratory health podcast series from the ALA produced by HCPLive.

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