Contributing to the #Co90sDiscoveries series, Professor Nishi Chaturvedi discusses some of the research into long COVID, which relies on participant data such as Children of the 90s.

By asking Children of the 90s participants to share their experiences of long COVID, researchers are gathering vital evidence about the condition that is helping to determine policy and healthcare practices.

Understanding long COVID: Prevention and treatment relies on participant data

Around two million people in the UK are affected by long COVID, enduring symptoms for 12 weeks or more after they’ve been infected. In order to develop new treatments, more information is needed about what causes some people to suffer the condition more than others. Together with GP records, longitudinal health studies like Children of the 90s are helping researchers and clinicians improve their scientific understanding and treatment of long COVID.

Understanding the risks

As the pandemic intensified, long COVID cases were increasing, but GPs didn’t know who was most at risk of long COVID and why. Children of the 90s is one of 10 birth cohort studies that contributed data alongside GP records to a nationwide study of the social, economic and health risk factors at play.

“These are hugely important societal challenges that are not yet well understood,” says Professor Nishi Chaturvedi from University College London, lead researcher on the CONVALESCENCE study, which is the first of its kind in the UK.

“Relying on healthcare records alone misses important parts of the picture, because not everyone with health issues after COVID contacts their GP. So it is only by asking people directly about what’s happening to their health that we get good quality information. 

“Children of the 90s are a critical group of young adults, there are few other studies with detailed health data on this age group. We’re very fortunate that over the years these study participants have given us extremely valuable information on their health before the pandemic, and that they have continued to help by answering COVID related questions during the pandemic.”

Providing evidence for the Government’s SAGE committee

Researchers analysed anonymised data from 1.2 million primary health records across the UK together with data from 45,096 participants in 10 population-based cohort studies.

They found that one in six (17%) middle-aged people who reported being infected by COVID-19 also report long COVID symptoms. This fell to one in 13 (7.8%) among younger adults. The risk increased with age up until 70 years.

Women and people with pre-existing physical and mental health conditions, especially asthma, were most at risk, while non-white ethnic minority groups were 70% less likely to report long COVID.

The findings provided more reliable estimates of the risks of long COVID as well as providing evidence for the Government’s Scientific Advisory Group for Emergencies (SAGE).

“People do recover from long COVID, and although this is not a well-recognised story it should offer hope to people suffering with the condition,” adds Professor Chaturvedi.

“What we don’t know yet is what proportion of people recover, how long it takes or what determines recovery. Asking people is the only way to get a handle on recovery, so we continue to rely on the help of study participants as we try to answer these important questions.”