Clearly Defining ‘Long COVID’

A national panel of experts that includes the director of the UConn Health Disparities Institute calls for a redefinition of the term “long COVID.”

The National Academies of Sciences, Engineering, and Medicine committee is out with a report recommending long COVID be defined as “an infection associated with chronic condition that occurs after COVID-19 infection and is present for at least three months as a continuous, relapsing, or progressive disease state that affects one or more organ systems.”

Recognizing the existence of multiple working definitions of long COVID, the federal government asked the National Academies to come up with single, common one.

“Long COVID has profound medical, social, and economic consequences worldwide,” says the NASEM in a statement. “The lack of a consensus definition presents challenges for patients, clinicians, public health practitioners, researchers, and policymakers. For patients, varying presentations of the disease and competing definitions can lead to difficulties accessing medical care or obtaining support, skepticism and dismissal of their experiences, delayed or denied treatment, and social stigma.”

Linda Sprague Martinez, who joined UConn Health as director of the Health Disparities Institute last fall, is part of the committee, which engaged more than 1,300 participants in preparing the report.

“An important dimension of this definition that providers should pay attention to is the way in which it explicitly attends to health equity,” Sprague Martinez says. “This is critical because health care inequity is pervasive and the health care needs of people of color and the poor are frequently overlooked.”

The consensus study report, released this week, includes findings that socioeconomic factors, inequality, discrimination, bias, and stigma can be factors in timely, proper diagnoses, which can impact the potential benefit of care and services specific to long COVID. Examples given include access to COVID-19 testing during acute illness, access to evaluation for possible long COVID, providers’ willingness to diagnose a particular patient, access to insurance benefits, and patients’ fears of stigmatization from a long COVID diagnosis.

The U.S. Department of Health and Human Services, through its Office of the Assistant Secretary for Health and Administration for Strategic Preparedness and Response, requested the report, which also gives examples of how establishing a clear consensus definition of long COVID can have wide application:

• clinical care and diagnosis
• eligibility for health services, insurance coverage, disability benefits, and school or workplace accommodations
• public health
• social services
• policymaking
• epidemiology and surveillance
• private and public research
• public awareness and education, especially for patients and their families and caregivers

Under the new definition, long COVID can involve any organ system, single or multiple symptoms, and single or multiple diagnosable conditions, and any of the following could be true:

• It can follow asymptomatic, mild, or severe COVID-19 infection.
• It can be continuous from the time of acute infection or delayed for weeks or months following apparent recovery.
• It can affect anyone of any age, anywhere.
• It can exacerbate pre-existing conditions, or present as new conditions.
• It can resolve over a period of months or persist for years.
• It can be diagnosed on clinical grounds, not requiring laboratory confirmation or even proof of initial infection.
• It can profoundly impact patients, their families, and their caregivers physically and emotionally.

The full report, “A Long COVID Definition: A Chronic, Systemic Disease State with Profound Consequences,” is available online through the National Academies of Sciences, Engineering, and Medicine.