New tool to assess symptoms of Long COVID

A comprehensive tool capable of assessing symptoms of Long COVID has been developed at the University of Birmingham for use in research and clinical care.

Developed with patients who have had a Long COVID experience, the tool can capture symptoms and their impact on daily life.

Currently, more than 200 symptoms are associated with Long COVID which can affect people for months after the initial coronavirus infection has cleared. These can affect many organs in the body and include shortness of breath, fatigue or brain fog and are estimated to affect around 1.3 million people in the UK and over 100 million people worldwide .

Healthcare providers and researchers need reliable ways to measure these symptoms as they are experienced by patients to help them develop new treatments and provide the best care possible.

A team from the Center for Patient-Reported Outcomes Research at the University of Birmingham designed the Symptom Burden Questionnaire™ for Long COVID to address this challenge. Patients can use it to report symptoms and the data can be used to help identify treatments and test whether they are safe and effective. The approach is published today (April 27, 2022) in the BMJ.

“People living with Long COVID say they experience a wide range of symptoms, but getting them recognized by healthcare professionals and policy makers has been a struggle,” said lead author Dr Sarah Hughes. “We have designed and tested this tool with our patient partners to ensure that it is as comprehensive as possible, while not being burdensome for patients.”

Public partner Karen Matthews of LongCOVID SOS noted, “I participated in a study quite early in my state and the questionnaire used did not capture the magnitude of how I was feeling. Being able to craft something that could record that experience more effectively is worth the effort, and I hope it will give researchers and people like me who take part in future studies some valuable evidence.

The resulting questionnaire measures different symptoms of Long COVID and the impact of these symptoms on daily life. It was developed with extensive patient input in accordance with regulatory guidelines, which means its scores can be used to support regulatory decisions regarding the approval of new therapies for Long COVID and by policy makers.

The study was carried out in partnership with patient data technology specialist, Aparito Ltd, and funded by the National Institute for Health Research and UK Research and Innovation. The team plans to carry out further development and testing to explore how the tool can be used in routine clinical practice, including translating it for use in other countries and ethnic minority communities.

Further details regarding metering and access for use can be found at

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