A major new COVID-19 study is being launched in Scotland to understand the long-term health of people who have had COVID-19.
Led by the University of Glasgow, in collaboration with Public Health Scotland and the NHS in Scotland, and funded by the Scottish Government Chief Scientist Office, the ambitious research project will seek to better understand how many people have long-term problems after COVID in Scotland, using an app that will enable people to explain how COVID-19 is still affecting their lives.
Researchers hope the CISS study will be able to identify how many people continue to be unwell following COVID-19 in Scotland, their symptoms and how it affects their lives.
Using NHS health data records, all Scottish adults who have had a positive COVID-19 test, as well a sample of people who tested negative for the disease, will be sent an SMS message inviting them to take part in the study. If they agree, individuals will be asked to use the specially designed app to answer questions about their health, both before and after COVID-19, and whether the virus has had any lasting effects on their lives.
Those participants who tested negative for COVID-19 will be asked similar questions about their current and past health, and are essential to the study, so that researchers can compare the health of those who have and those who have not had the virus.
Professor Jill Pell, Professor of Public Health at the University of Glasgow who will lead the study, said: “Most people recover quickly and completely after infection with COVID-19, but some people have reported a wide variety of long-term problems. It is crucial that we find out how many people have long-term problems, and what those problems are, so that we can set up systems to spot problems early and deal with them effectively.”
Evidence gathered from patients since the beginning of the pandemic suggests that, for some people, symptoms of COVID-19 persist beyond the expected period of infection. Termed “long COVID”, these symptoms are currently defined as “not recovering for several weeks or months following the start of symptoms that were suggestive of COVID, whether you were tested or not.
Chief Medical Officer Dr Gregor Smith said: “We recognise the longer term impacts COVID-19 is having on the physical and mental wellbeing of people in Scotland.
“Government, clinicians, specialist healthcare professionals and third sector organisations are working hard to ensure people have access to the support they need for assessment, diagnosis, care and rehabilitation in a setting that is as close to their home as possible.
“This new study will be a valuable tool to help us learn more about the effects of what is still a relatively new illness and ensure people receive the best possible treatment and care. If you are contacted to take part in the study I would strongly encourage you to participate – your insight will be extremely valuable.”
Estimates of the number of people suffering with long COVID vary, and we currently know very little about the condition and its long-term effects. So far, research studies indicate that the most common persistent symptoms include breathlessness and fatigue, although people have reported a number of other on-going health concerns. It is also thought that some people might initially recover but their symptoms recur later.
Those who agree to participate in the study will be asked questions about their health before and after their COVID-19 infection via an app that has been specially designed to support this research. These participants will then be asked to answer the same questions again 12, 18 and then 24 months after their initial positive test. Some participants will also be asked to take part in one-to-one interviews to discuss, in more detail, the impact of COVID-19 on their health and normal activities of living.
The study will also recruit a comparison group who tested negative for COVID-19, at a ratio of three comparison group participants for every participant who tested positive for the virus. This group will also be asked a similar set of questions, so that researchers can begin to understand how the long-term health of infected people is different from those who weren’t infected.
The results will provide insight into the scale and nature of long-COVID; how many people have long-term sequelae, the type of long-term sequelae; and the impacts of them on daily living. It will enable us to predict who needs ongoing health and social care and the type of support needed.
David Lowe, Co-Chief Investigator and Consultant Emergency Medicine at the Queen Elizabeth University Hospital, commented: “We encourage everyone contacted to take part so we can understand the impact of Long Covid in Scotland. The information will help the NHS develop services and support for those who are still suffering problems following COVID-19 infection.
“Delivery of this innovative study has been made possible with the digital tools we developed with partners during the pandemic. People will be invited by text message to participate with a link to allow them to respond to the short question set. We are asking the Scottish public who had both a positive and negative test to tell us about their health. We want to understand ongoing health problems but how COVID effected return to work and normal activity.”
Dr Andrew McAuley, Consultant Scientist at Public Health Scotland, said: “Studies looking into the long-term effects of COVID-19 do already exist, but the majority are focused on patients who have been hospitalised, therefore only capturing a small number of the overall infections in the country. Crucially, this study will look at all COVID-19 positive cases irrespective of their initial symptoms, or whether they required any medical care during their illness.
“I urge all those who are invited to take part in this study to do so – answering some simple questions about your experience of Covid-19 can help shape Scotland’s response to long COVID.”