Published: 27 April 2022
Researchers have worked with patients to develop a comprehensive tool to assess the symptoms of long COVID and their impact on everyday life.
Around 1.7 million people in the UK, and more than 100 million people worldwide, continue to experience symptoms more than four weeks after having COVID-19, a condition known as long COVID.
Currently more than 200 symptoms affecting many organs in the body are associated with long COVID, including breathlessness, fatigue and brain fog. Healthcare providers and researchers need reliable ways of measuring these symptoms and how they are experienced by patients, to help them develop new treatments and provide the best possible care.
To address this challenge, a team of researchers funded by NIHR and UK Research and Innovation worked with people with lived experience of long COVID to design and validate a new Symptom Burden Questionnaire™ for long COVID. The details of this process have been published in the British Medical Journal.
The questionnaire asks patients to report their experience of different symptoms of long COVID over the past 7 days and the impact of these symptoms on daily life. The resulting data could be used in research to develop and test new treatments and to inform clinical management.
Senior author Dr Sarah Hughes, from University of Birmingham, said: “People living with long COVID say they experience a huge range of symptoms, but getting these recognised by healthcare practitioners and policy-makers has been a struggle. We designed and tested this tool with our patient partners to ensure it is as comprehensive as possible, while also not being burdensome for patients to complete.”
Public partner Karen Matthews, from Long COVID SOS, said: “I participated in a study quite early on in my condition, and the questionnaire used didn’t capture the breadth of what I was feeling. Being able to shape something that could record that experience more effectively is worthwhile and I hope it gives researchers and people like me taking part in future studies some valuable evidence.”
The team plans to carry out more development and testing to explore how the tool can be used in routine clinical practice, including translating it for use in other countries and communities where English isn't the first language.