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Pastor Ben Thomas, who contracted COVID-19 early in the pandemic and is still suffering from respiratory and heart problems two years later, is pictured at his home in East Meadow, New York, March 2, 2022. Newsday LLC /Getty Pictures
  • Long COVID is associated with various symptoms that continue to baffle scientists.
  • Working with people with long COVID, the researchers developed a questionnaire to more clearly define the condition.
  • The questionnaire will be combined with other data to provide physicians with a more actionable understanding of long COVID.

Although “long COVID” is a household term and a concerning phenomenon, it is still unclear what the condition is. Also called post-COVID-19 syndrome, long COVID encompasses persistent symptoms of COVID-19, as well as symptoms that appear after the acute or active infection stage of COVID-19. It can involve any number of organs.

Now, researchers from the Center for Patient-Reported Outcomes Research at the University of Birmingham in the UK have developed and validated a comprehensive questionnaire designed to help pin down a definition of long COVID.

Dr. Jai G. Maratheinfectious disease expert at Boston Medical Center in Massachusetts, described the problem to Medical News Today:

“Long COVID is a condition that clinicians learn with patients, and in many cases we learn from the patients. Post-COVID conditions may look different to different people, as more than 50 symptoms have been described, and these are often difficult to recognize by both patients and the medical community.

“Now,” said Dr Marathe, “add to that the fact that an estimate 30% COVID survivors can experience a long period of COVID, and the number of presentations that different patients can present becomes staggering. In addition, the intensity of symptoms can vary from very mild with minimal impact on daily life to severe, resulting in disability.

“Think about [long COVID] like boarding a moving train where the departure and arrival stations are unknown and the answer to the always dreaded question: “Have we arrived yet?” is a great mystery.
— Dr. Jai G. Marathe

A study describing the creation of the Symptom Burden Questionnaire for long COVID, or SBQ-LC, is published by the bmj.

The main author of the study and the questionnaire is Dr. Sarah Hughes, researcher at the University of Birmingham. She shared her team’s motivation with DTM:

“We know that the long COVID covers a wide range of symptoms, often fluctuating, which can appear at any time after the initial infection with COVID-19. It is therefore difficult to know what the real duration of COVID is and therefore what needs to be measured. »

“What was clear was that people living with long COVID told us that existing measures were not fully capturing their lived experience.”
— Dr. Sarah Hughes

To gain a more useful understanding, the researchers designed a “measurement of patient-reported outcomesor PROM. People who have had COVID-19 can complete it themselves or during an interview.

From these interviews and literature reviews, the researchers identified a long set of COVID symptoms. They presented the results to 10 clinicians who validated and identified clinical symptoms of concern. They then field tested the draft questionnaire on 274 adults with long COVID.

Dr Hughes then explained:

“When deciding ‘what to measure’ in long COVID, our decisions were based on current understanding of long COVID from published literature, identification of symptoms of clinical concern from the perspective of a health and a researcher, but most importantly, first-hand accounts of symptoms as experienced by people with long COVID.

The researchers “worked extensively with people with lived experience at each phase of the development of the SBQ-LC to ensure that the items (questions) represented all the symptoms of long COVID considered important for people living with the disease” , she said.

It is impossible to know at this point if long COVID is a single disease or if it includes several conditions linked only by their origin to COVID-19.

“It is certainly useful to explore the long COVID as a single condition. In the clinical setting, grouping symptoms that may be temporarily associated with COVID-19 will allow for easier identification and diagnosis of patients who will benefit from clinical assessment and management as needed,” said Dr. Maratha.

“I would consider the Long COVID investigation as a starting point for more granular further research,” she added.

An immediate consequence of the SBQ-LC will be its delivery of data to another study, the Therapies for long COVID (TLC) in non-hospitalized people funded by UK NHRI and UKRI. Data from the SBQ-LC will be combined with data from other “PROMs” (provided via a digital platform developed by Aparito Ltd.), portable data, and blood and other biological tests to immunologically characterize and phenotype long COVID syndromes,” according to Dr. Hughes.

“We hope,” noted Dr. Hughes, “[the SBQ-LC] will be widely adopted as part of a core long-COVID outcome set to enable comparative global data.

Still a lot of unknowns

Given that experts don’t yet know how long after an acute infection it might be before COVID symptoms stop appearing, it raises the question of how experts can be sure they’ve captured enough data to fully encompass all aspects of the disease.

“I think that’s a very difficult question to answer, precisely because we don’t know who is likely to develop long COVID. Will newly emerging variants impact the development of long COVID, and how long will it take for the post-COVID state to resolve for each patient? said Doctor Marathe.

She pointed out that this type of uncertainty had been experienced before, citing the long term Framingham Heart Study:

“As our understanding of heart disease increased, research results were no longer labeled as preliminary, and I think the same will happen with long COVID data.”