How do we define long Covid patients?

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Despite increasing prevalence and burden on new patients, Covid has long remained a relatively ill-defined chronic disease, determined by hundreds of signs or symptoms and often missed by both clinicians and patients until it is well advanced in its course.

In the latest episode of Lungcast, American Lung Assocation (ALA) Chief Medical Officer Al Rizzo, MD, spoke with longtime researcher and patient Julia Moore Vogel, PhD, MBA, Program Director of the Participant Center of the Scripps All of Us Research Program, about the challenges of defining and properly researching long Covid. Chief among her frustrations and those of her colleagues is the variety in which she can present herself to patients.

There are more than 200 different symptoms people can have, and we don’t even have well-defined subtypes, Vogel said. Some people feel a little worse than before and some people are completely bedridden. There’s this wide variety of presentations that makes it hard to categorize what it is.

Additionally, PCR testing infrastructure, which was previously a widely available resource during the COVID-19 pandemic, was all but mitigated in the United States at the end of the public health emergency declaration. Long Covid patients may very well be unaware of their condition.

Many long-time Covid patients may not even have known they had suffered the acute infection, Vogel said. This diagnostic element has been a real challenge both for people who have tried 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 who couldn’t access testing when they needed it.

Regarding the lengthy Covid diagnoses, Vogel stressed to clinicians that they avoid letting the perfect be the enemy of the good.

Listen to patients and what they tell you; ask about the disease in general and you can better guess what it is, she explained. A lot of things in medicine aren’t perfect, and I think that’s the kind of situation here.

While Vogel thinks pursuing disease-scoring systems instead of biomarkers or other quantitative measures is a good idea, she pointed out that data sources may currently be lacking for relevant long-Covid symptoms and signs. There remains a high risk of missing patient data from those who do not access their healthcare system, whether because they are unaware of their diagnosis or because they are embarrassed enough by their illness to be physically unable to see a doctor.

I’m very concerned about those two things, that you’re missing pieces of the puzzle and that we really need to be thoughtful in the research that’s been designed to make sure we’re including the people who need the research the most, Vogel said.

Lungcast is ALA’s monthly respiratory health podcast series produced by HCPLive.

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