While “long COVID” is a familiar term and a concerning phenomenon, it is still unclear what the condition is. Also called post-COVID-19 syndrome, long COVID encompasses lingering symptoms of COVID-19, as well as symptoms that appear after COVID-19’s acute or active infection stage. It may involve any number of organs.
Now, researchers from the University of Birmingham’s Centre for Patient-Reported Outcomes Research in the U.K. have developed and validated a comprehensive questionnaire designed to help pin down a definition of long COVID.
Dr. Jai G. Marathe, infectious disease expert at Boston Medical Center in Massachusetts, described the problem to Medical News Today: “Long COVID is a condition that the clinicians are learning along with patients, and in a lot of cases, we are learning from patients. Post-COVID conditions may look different for different people, as over 50 symptoms have been described, and often it is difficult to recognize by both the patients and the medical community.”
“Now,” said Dr. Marathe, “add to this the fact that an estimated 30% of COVID survivors may experience long COVID, and the sheer number of presentations that different patients may exhibit becomes staggering. In addition, the intensity of symptoms may range from very mild with minimal impact on day-to-day life to severe, resulting in disability.”
“Think of [long COVID] as boarding a running train where the departure and destination stations are unknown and the answer to the ever-dreaded question, ‘Are we there yet?’ is a big mystery.”
A study describing the creation of the Symptom Burden Questionnaire for long COVID, or SBQ-LC, is published by the bmjTrusted Source.
The lead author of the study and questionnaire is Dr. Sarah Hughes, a research fellow at the University of Birmingham. She shared her team’s motivation with MNT: “We know that long COVID covers a wide range of, often fluctuating, symptoms that can appear at any time following the initial COVID-19 infection. This makes it difficult to know what long COVID actually is and therefore what should be measured.” “What was clear was that individuals living with long COVID told us that existing measures did not fully capture their lived experience.”