Up to one in six people with COVID-19 report long COVID symptoms

29th June 2022 – King’s College London

One in six (17%) middle-aged people who report being infected by SARS-CoV-2 also report long COVID symptoms, while this falls to one in 13 (7.8%) among younger adults who reported having Covid-19, according to a new study led by King’s and UCL which is now published in Nature.

coronaviruses

The preliminary findings, part of the UKRI-NIHR funded multi-institution CONVALESCENCE study and submitted to the preprint server medRxiv, also found that women were 50% more likely to report long COVID than men, and that the risk for long COVID symptoms increases with age, is linked to poorer pre-pandemic mental and physical health and is associated with a previous diagnosis of asthma. Non-white ethnic minority groups had lower odds of reporting long COVID (about 70% less likely).

Using a stricter definition of long COVID as impacting routine daily activities, the researchers found that it affected 1.2% of 20-year-olds who had Covid-19, but 4.8% of people in middle age.

The researchers analysed anonymised data from 1.2 million primary health records across the UK together with 10 population-based cohort studies with 45,096 participants. Using existing cohort studies, whose participants are surveyed regularly, allowed the research team to include cases not reported to the GP and to look at people’s health before the pandemic.

Knowing which factors increase the risk of long COVID is an important first step in understanding how best to prevent and treat this condition.

Professor Nishi Chaturvedi (MRC Unit for Lifelong Health and Ageing at UCL), who leads the ongoing CONVALESCENCE study, said: “Getting consistent findings from this combination of many different studies gives us greater confidence that our findings are robust, which is critical given that we know so little about long COVID.”

First author Dr Ellen Thompson, of King’s College London, said:

“It’s really important to identify risk factors in the population so we can prepare and devise prevention strategies, protecting people at increased risk of poor outcomes from COVID-19.”

First author Dr Dylan Williams (MRC Unit for Lifelong Health & Ageing at UCL) said:

“Amassing this body of evidence would usually take many months or years to assemble but we achieved this more quickly through massive, constant collaboration by researchers at many different institutions.

Dr Claire Steves from the School of Life Course Sciences said:

“Our findings hint at the mechanisms behind long COVID. Next, we need to identify the predispositions that might explain, for example, why women or individuals with asthma appear to be at higher risk. Could a liability to suffer from autoimmunity or allergies play a role? Establishing concrete research avenues to go down will eventually lead to benefits for people with long COVID.”

The study forms part of the larger COVID-19 Longitudinal Health and Wellbeing National Core Study, which is investigating the health, social and economic impacts of the COVID-19 pandemic by combining rich pre-COVID data collected from participants of numerous national research studies with national anonymised electronic health records.

The researchers investigated if the risks of developing long-term Covid symptoms differed by several pre-pandemic socioeconomic and health characteristics. Coordinated analyses of the longitudinal studies and health records data showed consistently that female sex and increasing age (up to 70 years) were associated with increased odds of long COVID.

Pre-existing adverse mental health was associated with a 50% increase in the odds of reporting long COVID, while asthma was the only specific prior medical condition consistently associated with greater risk of developing lasting Covid-19 symptoms (a 32% increase). Participants were identified as having pre-existing adverse mental health if they had been diagnosed with one of a number of conditions such as depression and bipolar disorder, or their responses to questionnaires indicated they had a mental health condition before the pandemic.

Analysis was conducted on 6,899 individuals self-reporting COVID-19 from 45,096 surveyed adult participants of ongoing longitudinal studies in the UK, and on 3,327 cases assigned a long COVID code in primary care electronic health records out of 1,199,812 adults diagnosed with acute COVID-19. Long COVID, identified as Post-COVID-19 syndrome in the study, is defined as symptoms persisting for longer than 12 weeks after the initial infection.

The research team included researchers at the Universities of Bristol, Edinburgh, Glasgow, and Oxford, as well as the London School of Hygiene & Tropical Medicine, and the Bradford Royal Infirmary.

Dr Fiona Glen, programme director for the NICE Centre for Guidelines, said:

“There is still much we do not know about the long-term effects of COVID-19. We continue to monitor and assess the latest evidence on the long-term effects allowing us to continuously update our guideline recommendations. We welcome this new research which will ensure we have a better understanding of how to manage the care and treatment of patients with prolonged symptoms of COVID-19.”

Your Contribution to COVID-19 Research

10th February 2022 – By Aaruthy Suthahar

Woman holding beaker and notepad

In October 2020, the National Core Studies commenced as part of the UK’s response to the COVID-19 pandemic. The National Core Studies are using health data to rapidly inform policy to help us get through the pandemic. 

TwinsUK is closely involved in the Longitudinal Health and Wellbeing National Core Study, which aims to understand the health, social and economic impacts of the pandemic. We are one of many UK longitudinal population cohorts taking part in the project.  

This large, multi-institution team is working together to answer key questions across several different areas. Current priority research questions include: how was healthcare disrupted by the pandemic; did government schemes such as furlough help; how was mental health impacted by the pandemic; how well do vaccines work; and what are the short and long-term consequences of infection on health.  

The team has prioritised questions that harness the unique aspects of cohorts like TwinsUK, such as extensive pre-pandemic data. By working together and triangulating analysis in longitudinal health cohorts and electronic health records, we can provide robust evidence to inform policy. 

Findings are regularly reported to the government’s Scientific Advisory Group for Emergencies (SAGE) and the Cabinet and have influenced NICE guidelines, which dictate how to treat medical conditions.  

Results and impact so far 

Every day we are learning more about COVID-19 and its impact, thanks to our TwinsUK members taking part in studies and questionnaires and our researchers rapidly analysing all the data coming in. Below are some key examples to date that TwinsUK was involved in: 

Society and Health: The coronavirus job retention scheme was associated with the preservation of health behaviours (eating, drinking, smoking, sleeping habits) similar to those remaining in employment, and more favourable to those who become unemployed. Also, while mental and social wellbeing declined in those furloughed, the effects were far less than those who lost their jobs. This suggests that social protection policies should be implemented in the post-pandemic recovery period and during future economic crises.  

Healthcare Disruption: The pandemic led to unequal healthcare disruptions. Females, ethnic minorities, and disadvantaged people were most affected. Action is needed to prevent the widening of existing health inequalities, and efforts to ensure continuity of care during pandemic-related disruptions may need to be more clearly targeted to those who most need that care.  

Mental Health: People with prior mental ill-health were hit harder by pandemic disruption. Inequality between those with and without mental health problems should be considered when provisioning current and post-pandemic health, economic, and well-being support. Also, a substantial deterioration in mental health seen during the first lockdown did not reverse when lockdown was lifted, suggesting that lockdown alone was not responsible for the decline in mental health. There is a need for investment in mental health support to address all underlying causes.  

Long COVID: We found that long COVID is associated with women, middle age, and pre-existing health factors, including asthma. Understanding why different groups of people have different levels of risk could both identify high-risk groups and help us understand how best to prevent and treat long COVID.  

What are we working on now? 

We are currently working with collaborators at University College London (UCL) to carry out a detailed study of how COVID-19 affects the body. This will help us understand long Covid, which is when infected individuals continue to experience symptoms for many weeks and even months after infection.  

This study will recruit people with a range of COVID-19 experiences, and participants will be invited to UCL’s clinic in London for a full day of checks and health tests, including an MRI scan. TwinsUK is the first cohort to recruit participants to CONVALESCENCE, which aims to recruit 800 participants in total. We have recruited more than 150 twins to take part, mainly in twin pairs.  

A big thank you 

We would like to take this opportunity to thank our twins for everything they have contributed to this vital research, both by taking part in sample collection and questionnaires during the pandemic, but also for all of the data they have previously provided to TwinsUK, which is essential to understand how the pandemic has affected health.  

TwinsUK’s Dr. Claire Steves is a senior researcher working across the National Core Study and CONVALESCENCE. Dr. Steves explained: 

“There is a wealth of data in the UK’s population cohort studies and linked health records. The pandemic has shown the importance of using these unique resources to answer key questions about public health and inform policy as quickly as possible.”

“I would like to thank each and every one of our twins for the vital role they are playing in defeating COVID-19.” 

If you would like more information on our COVID-19 research, please click HERE.  

What does Long Covid mean to you?

4th February 2022

Woman lying in bed with mug

Since the pandemic began, people have been reporting that they have continued to experience symptoms for weeks or even months after infection. This can range from mild symptoms all the way to debilitating symptoms that have a major impact on people’s lives. This condition is now described as ‘Long Covid’ – but there is currently no set definition of what constitutes Long Covid, even as more and more people develop the condition.

TwinsUK is part of a multi-university study called CONVALESCENCE, which aims to understand, define and improve diagnosis of Long Covid. There are many parts to this project, and more information is available here.

As part of this research, we want to hear what Long Covid means to you. To facilitate this, the CONVALESCENCE team have created an online discussion forum. The aim of the forum is to ensure that a wider cross section of public and patient perspectives are included in discussions about how to define Long Covid and in the broader research. 

The forum is hosted on the People in Health West of England (PHWE) Discourse Platform. The platform works in a similar way to social media you may be familiar with such as Facebook. Your input will help in shaping how we progress the research going forward.  

The Long Covid forum space is public. Public forum areas on the Discourse platform can be viewed by anyone, but only people that have created an account can reply. 

If you would like to contribute to the development of this research as a public contributor, you are welcome to join the conversation by creating an account.  

Click on this link to view the public forum space dedicated to discussing how we should define Long Covid, and register for an account if you would like to participate in the conversation. Click here for a short guide to the forum. 

TwinsUK to take part in key Long COVID research programme

22nd February 2021

TwinsUK will be joining forces with other cohort studies across the UK to study Long COVID through a key project announced last week.

Approximately one in 10 people with COVID-19 continue to experience symptoms and impaired quality of life beyond 12 weeks, known as Long COVID.

The project, which has received £9.6 million in funding from UKRI over three years, aims to provide an evidence base for healthcare services to define what Long COVID is and improve diagnosis. The project will address why some people get the condition; the typical effects on a person’s health and ability to work; and the factors which affect recovery.

Dr Claire Steves, Deputy Clinical Director of TwinsUK, will be leading TwinsUK’s contribution to the project. Dr Steves said:

“I am thrilled that TwinsUK will be involved in this national effort to study Long COVID and its long-term effects. This research is essential so that we can understand how healthcare services can best support people experiencing Long COVID.”

Long COVID can present with clusters of symptoms that are often overlapping and/or fluctuating. Symptoms vary, but common ones include breathlessness, headaches, cough, fatigue, cognitive impairment or ‘brain fog’. Long COVID may comprise several distinct syndromes not yet fully understood and these studies will help solve this.

Over the three years of the project, the team of researchers will use data from more than 60,000 people drawn from a combination of anonymised health records and longitudinal studies of people of all ages across the country (like TwinsUK).

From these studies, people reporting Long COVID and comparator groups will be asked to wear a wrist band measuring exercise ability, breathing and heart rate. Participants will also complete online questionnaires on mental health and cognitive function. They may also be invited to a clinic for non-invasive imaging to look at potential damage to vital organs, such as the brain, lungs and heart.

Dr Claire Steves said:

“Throughout the pandemic, our twins have taken part in a variety of essential studies to understand COVID-19. I am grateful for and humbled by their commitment to health research, a feeling which I know is shared by everyone at TwinsUK.”

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