Experts urge vigilance in rushing to define the long term COVID

While the old COVID-19, also known as the post-acute sequelae of SARS-CoV-2 (PASC), is a rapidly emerging health crisis across the US and abroad, there is no practical medical definition for it — and it may not be the case. the bad ones, say experts.

There are overarching definitions for long-term COVID, such as that from the CDC, which states that long-term COVID-19 is first identifiable “at least four weeks after infection,” and WHO, which says that it occurs “usually within three months of the onset of COVID-19, with symptoms and effects that last for at least two months.”

The medical community has taken a more clinical swing in defining the term COVID in an effort to improve patient care. The American Academy of Physical Medicine and Rehabilitation has listed 50 different symptoms that may be associated with prolonged COVID-19. Scrolling through patient-driven forums, such as a Reddit channel called r/covidlonghaulers, reveals a wider list of symptoms.

However, researchers and doctors working to understand the old COVID-19 are no closer to identifying a clear definition for diagnosing or treating the condition. The absence of a clearly defined algorithm for a long COVID-19 may frustrate doctors and their patients, but experts agree that the rush to define a long COVID-19 could present many new challenges.

Building Blocks Definition

According to Lawrence Kleinman, MD, MPH, of the department of pediatrics at Rutgers Robert Wood Johnson Medical School in New Jersey, we need to take the time to define lengthy COVID-19, whether it’s by checklists, algorithms, or entries for a medical dictionary.

“If we define it in a certain way and we miss something in that initial definition, then there will be silence until someone comes along and does a postmortem on our analysis,” Kleinman, who is also principal investigator at Rutgers pediatrics center, said in a statement. from the NIH national RECOVER study, says MedPage Today. “We want to avoid that as far as possible.”

He said more research and data collection was needed before work on defining the term COVID was possible in a clinically meaningful way. Currently, he said, there are no clear criteria for where to start.

For example, should researchers focus on regulating the specific number of days a person experiences fatigue after an acute COVID infection? If so, what should that range be like — fatigue after 30 days? As he points out, there isn’t enough data to develop the basic elements researchers need to build a practical definition just yet.

Without such datasets, such as the fatigue mechanisms associated with the old COVID-19, researchers cannot begin to come up with definitions that can help doctors diagnose and treat patients with the symptoms.

And they probably shouldn’t try, says Sally Hodder, MD, of the University of West Virginia Center for Health Sciences. MedPage Today.

“I think the worst thing, especially when an entity isn’t understood, is to start making definitions that aren’t well-grounded in science and rule out things that are actually really important,” said Hodder, who is principal investigator at his university. adult center of the RECOVER study.

Researchers now know more about the old COVID-19, but they also agree that this isn’t the right time to rush into specific clinical definitions, partly because they’re still in the discovery stage – but that’s not the only reason.

More Complex Than One Definition

Another insight that has emerged about long-standing COVID is the possibility that it is more than just one syndrome. Walter Koroshetz, MD, director of the National Institute of Neurological Disorders and Stroke, emphasizes that even the name “post-acute SARS-CoV-2 sequel” denotes plurality.

In fact, the experts who spoke to MedPage Today agree that it has several distinct phenotypes and endotypes. As such, researchers need to focus on developing not just one definition, but multiple definitions, each with clinically relevant algorithms and guidelines to help clinicians work through each lengthy version of COVID.

“They are all important, but they are all different,” Koroshetz, who is also co-chair of the RECOVER Senior Oversight Committee, noted.

According to David Putrino, PhD, director of rehabilitation innovation at Mount Sinai Health System in New York City, the focus should be on identifying the broad range of COVID-19 endotypes, including immune-mediated type, virus-mediated type, and virus-mediated type. chronic inflammatory type.

Furthermore, he said he believed there could be 10 to 15 different causes of the term COVID, which is why waiting to develop a clinically meaningful definition was so important for the sake of long-standing COVID patients.

“I think given how difficult it is to access adequate care right now, it’s very important for us to keep the long working definition of COVID as broad,” said Putrino. MedPage Today.

He noted that a more specific definition – for which there is no underlying evidence – could lead to an overemphasis on patient presentation that could jeopardize efforts to diagnose and treat as many patients as possible.

For example, using a positive PCR test or antibody test to identify long-standing COVID cases is likely to lead to health inequities, as people from historically underserved groups do not have the same access to such tests.

Putrino also noted that antibody tests had not gone as well as expected and some patients did not undergo seroconversion with COVID-19. The bottom line is that a specific definition for even one long COVID endotype will likely mean that large groups of patients will be left out of any future guidelines or algorithms, he said.

“Until we have a handle on all endotypes, narrowing the scope of the definition will be an unmitigated disaster,” he added.

Treatment Without Definition

While Putrino, along with several others, expressed concern about the lengthy definition of COVID, they are also pushing for more data collection.

This is one area where doctors and their patients can contribute meaningfully to building the knowledge base needed to eventually develop a clinical definition for the old COVID, Putrino said, acknowledging that so far this has not been an easy task. One of the main concerns is time.

“The first interaction most people with long-standing COVID have with medical professionals is with their primary care provider; their primary care provider has 15 minutes to work with them, which is barely enough time,” he said.

Putrino said that she thinks in order to get long-term COVID patients the care they need, and to improve extensive data collection, primary care providers should be given more time – one hour for the initial evaluation of long-term COVID patients, rather than the standard 15 minutes.

Diana Berrent, founder of Survivor Corps, a COVID patient research and advocacy organization, sees similar barriers to improving treatment options for protracted COVID. He noted that the current state of the study would not allow a patient-focused definition of this condition, and that the medical community may still not be aware of all the potential symptoms of long-standing COVID.

Like Putrino, Berrent said the current focus needed to be working with existing COVID patients.

“I think there needs to be an increased urgency that focuses on how to provide assistance, while we simultaneously seek definitions and identify the upstream causal mechanisms of this problem,” he said. “People are losing hope.”

Putrino stressed that the risk of narrowing the definition would be entirely on patients struggling to get the right treatment to treat their unique symptoms. A definition that excludes even a small number of patients would be a critical mistake in trying to tackle this crisis, he said.

“What we have to do now, given how difficult it is to receive treatment, we have to keep that definition broad,” he stressed. “We have to count everyone, and we have to say this is the number of people nationwide who have persistent symptoms.”

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  Michael DePeau-Wilson is a reporter on the company & investigative team MedPage Today. She covers psychiatry, long-term covid, and infectious disease, among other relevant US clinical news. Follow

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