The Long COVID lessons learned beyond the COVID-19 pandemic are detailed here by leading Professors working on the University College London STIMULATE-ICP programme
With an estimated 1.7 million people experiencing symptoms more than 12 weeks after infection with SARS-CoV-2 (COVID-19), also known as Long Covid, the UK, like many countries around the world, continues to face the long-term consequences of the pandemic. Of these people, 892,000 have had symptoms for at least one year and 429,000 for at least two years. Direct COVID-19 hospitalisations and deaths were the principal concern of governments and health systems in the acute phase of the pandemic. However, the impact is likely to be far greater and the Long COVID lessons learned can provide planning for long-term conditions and future pandemics far beyond COVID-19
STIMULATE-ICP trial tests interventions for Long Covid
Amitava Banerjee, Professor of Clinical Data Science and Honorary Consultant Cardiologist at University College London is chief investigator of the STIMULATE-ICP programme, funded by the NIHR. A multidisciplinary team of over 60 individuals is conducting a programme of work that includes a large trial to test interventions for Long Covid, and non-trial studies, from detailed analyses of inequalities in care provision and disease mechanisms to interviews with patients and clinicians.
After several major delays, including due to staff sickness with Long Covid (among both study researchers and clinicians), the trial began in earnest in August 2022. Approximately 100 individuals with Long Covid have been recruited so far, with the ambitious aim of recruiting over 4500 people in the next 12 months. The trial is evaluating an investigation strategy with multi-organ MRI scanning (CoverscanTM), several drugs in a platform study (famotidine/loratidine, rivaroxaban and colchicine) and a digital rehabilitation programme (Living with Covid RecoveryTM).
“Study protocols are now in the public domain, these include our studies of patterns of Long Covid care, a Delphi study to inform integrated care and the trial itself, so that people can scrutinise what we are doing and why,” says Banerjee. “Our team has already made important findings such as detectable clotting abnormalities and we will share more science, whether from our trial or non-trial studies, in coming months. Our work is relevant to other post-viral and other long-term conditions.”
Analyses in genomics, proteomics and metabolomics in the first clinical study of its kind in Long Covid
Hugh Montgomery, Professor of Intensive Care Medicine at University College London, noted the real and potential longer-term implications of COVID-19 while looking after patients on intensive care early in the pandemic. He has long-standing experience and expertise in mechanistic studies of physical performance, including multiomics. “Part of the problem is that we are trying to do trials without fully understanding the mechanism of what is likely to represent multiple diseases within the syndrome of Long Covid,” reflects Professor Montgomery. “The post-exertional malaise, which so many individuals with Long Covid are suffering from, is something that needs far more detailed study.”
Within the STIMULATE-ICP trial, blood is being collected at baseline and longitudinally to allow such investigations, and the resulting biobank is being funded and curated by Perspectum in Oxford. Moreover, in the UCL Hospitals NHS Trust Long Covid clinic, led by Dr Melissa Heightman (co-lead of the STIMULATE-ICP), a multi-disciplinary team of clinicians and scientists are conducting preliminary mechanistic studies, from clotting and immunology to genomics and exercise physiology, in Long Covid patients in routine care to inform clinical practice. Collaborating with teams at University of Cambridge, University of Edinburgh and University of Aberdeen, Hugh will be leading large-scale analyses in genomics, proteomics and metabolomics in the first clinical study of its kind in Long Covid.
Investigating the health economic impact of Long Covid
Paula Lorgelly is Professor of Health Economics at the University of Auckland and was previously Professor of Health Economics at University College London. She is a leading health economic analyses throughout the STIMULATE-ICP project in both the trial and non-trial aspects. “Long Covid brings specific challenges in terms of being a new condition, where we are still understanding the disease, its symptoms and the impact it has on quality of life,” notes Professor Lorgelly. “Understanding the health- care utilisation and the cost of care in Long Covid is therefore especially difficult since the recording in routine health records is patchy at best.” The cost of Long Covid to individuals, whether in terms of lost earnings, morbidity or cost of care, and to the economy as a whole, is potentially huge, given the numbers of people of working age affected.
She is leading a team of health economists who are working in nationally funded studies in the UK and is also investigating the health economic impact of Long Covid in the New Zealand context. In the trial, she will be analysing the cost and cost-effectiveness of interventions, whether MRI scanning, drugs or digital rehabilitation deliver value for money. “Long Covid highlights the importance of including health eco- nomic perspectives early in pandemic planning and the importance of collaborating across research studies.”
What do the Long COVID lessons learned tell us about integrated care for Long COVID?
Christina van der Feltz-Cornelis is Professor of Psychiatry and Epidemiology at the University of York. In STIMULATE-ICP, she is academic lead for work package 3b, a Delphi study to explore what integrated care for Long COVID and other Long-term conditions should look like. “A Delphi study is a way of gaining agreement (or consensus) about a topic of interest,” notes Professor van der Feltz-Cornelis. With a team of patients and clinicians covering a range of Long COVID and long-term condition experiences/specialities, who offer advice and guidance, she and her team develop surveys and speak to people to ask what is important when planning care for Long COVID or other long term conditions.
“Long COVID is a complex illness and people often report experiencing multiple symptoms which can change over time; this is similar to people with other long-term conditions,” she adds. The process is underway and will be presented to healthcare policymakers and other stakeholders as key recommendations about future care for Long COVID and other long-term conditions.
In work package 1b, Christina is also describing and comparing epidemiology, mortality, disease trajectories and resource use in long COVID in individuals with and without pre-existing long term physical and mental conditions, using large-scale UK electronic health records. She is also assessing risks of developing new long-term conditions, including mental health, in those with long COVID.
STIMULATE-ICP and other studies of Long Covid in the UK and around the world have implications for understanding and planning of care delivery for long-term conditions far beyond the COVID-19 pandemic.
This work is licensed under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International.
This disease called covid-19 has spoiled our world.