Fatigue is the symptom that most significantly impacts the daily lives of long Covid patients, and can affect quality of life more than some cancers, finds a new study led by researchers at UCL, University of Exeter and the University of Southampton.
The research, published in BMJ Open and funded by the National Institute for Health and Care Research (NIHR), examines the impact of long Covid on the lives of over 3,750 patients who were referred to a long Covid clinic and used a digital app as part of their NHS treatment for the condition. NIHR ARC Wessex and other ARCs helped in the development and testing of the digital app.
Patients were asked to complete questionnaires on the app about how long Covid was affecting them – considering the impact of long Covid on their day-to-day activities, levels of fatigue, depression, anxiety, breathlessness, brain fog, and their quality of life.
Dr Katherine Bradbury (pictured) , Digital health lead for NIHR
ARC Wessex, based at the University of Southampton explained that: "Now 8000 people using the app across 35 NHS trusts and 70% said its been helpful in latest survey, so hoping will make an impact on people's lives. "
The researchers found that many long Covid patients were seriously ill and on average had fatigue scores worse or similar to people with cancer-related anaemia or severe kidney disease. Their health-related quality of life scores were also lower than those of people with advanced metastatic cancers, like stage IV lung cancer.
Overall, the team found that the impact of long Covid on the daily activities of patients was worse than that of stroke patients and was comparable to that of patients with Parkinson’s Disease.
Dr Henry Goodfellow, who co-led the study alongside the late Professor Elizabeth Murray (both UCL Institute of Epidemiology & Health), said: “Up to around 17% of people who get Covid go on to develop long Covid*. However, the impact of the condition on patients’ day-to-day lives isn’t fully understood.
“Our results have found that long Covid can have a devastating effect on the lives of patients – with fatigue having the biggest impact on everything from social activities to work, chores and maintaining close relationships.”
Not only does long Covid negatively impact the lives of patients on an individual level, the researchers also believe that it could have a significant economic and social impact on the country.
In order to be referred to a long Covid clinic, a patient must have had symptoms in keeping with long Covid for at least 12 weeks after an acute infection.
Over 90% of long Covid patients using the app were of working age (18-65) and 51% said they had been unable to work for at least one day in the previous month, with 20% unable to work at all.
Meanwhile, 71% of patients were female. As working-age women make up a majority of the health and social care workforce, the impact of long Covid on their ability to function may add additional pressures to already stretched services.
Dr Goodfellow said: “We hope that a greater understanding of the symptoms and impact of long Covid in these patients will help the NHS and policymakers to target limited resources by adapting existing services and designing new ones to better meet the needs of patients with long Covid.”
According to the Office for National Statistics, around 1.4 million people in the UK had symptoms of long Covid as of July 2022. Alongside fatigue, patients typically experience breathlessness, anxiety, depression and brain fog.
However, this is the first study to report on the impact of the condition on day-to-day functioning and health-related quality of life in patients who have been referred for specialist rehabilitation in long Covid clinics across England.
Dr Goodfellow said: “Our findings show that fatigue should be an important focus for clinical care and the design of rehabilitation services.
“Post-Covid assessment services should consider focusing on assessing and treating fatigue to maximise the recovery and return to work for sufferers of long Covid.”
The research was carried out alongside partners at Southampton University, NIHR ARC Wessex, University of Exeter, Barts Health NHS Trust, University College London Hospitals NHS Trust, Royal Free Hospital, and Living With Ltd.
Study limitations
As the patients involved in the study were those under treatment, it is likely that they had worse symptoms than those who weren’t. However, researchers don’t know details about those long Covid patients that have chosen not to seek help for their symptoms.
Notes to Editors
Paper: https://bmjopen.bmj.com/content/13/6/e069217
Sarah Walker, Henry Goodfellow, Patra Pookarnjanamorakot, Elizabeth Murray, Julia Bindman, Ann Blandford, Katherine Bradbury, Belinda Cooper, Fiona L Hamilton, John R Hurst, Hannah Hylton, Stuart Linke, Paul E Pfeffer, Department of Respiratory Medicine, William Ricketts, Chris Robson, Fiona A Stevenson, David Sunkersing, Jiunn Wang, Manuel Gomes, William Henley. The impact of fatigue as the primary determinant of functional limitations amongst patients with Post-COVID syndrome: a cross-sectional observational study,
NIHR ARC Wessex is part of the National Institute for Health and Care Research and is made up of partner organisations across the NHS, Universities, Care organisations and more.
It runs around a hundred research projects across a wide rang of conditions and issues.
There are 15 Applied Research Collaborations across England and this project on long covid involved work from ARC Wessex, ARC Peninsula and ARC North Thames.
The mission of the National Institute for Health and Care Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:
Funding high quality, timely research that benefits the NHS, public health and social care;
Investing in world-class expertise, facilities and a skilled delivery workforce to translate discoveries into improved treatments and services;
Partnering with patients, service users, carers and communities, improving the relevance, quality and impact of our research;
Attracting, training and supporting the best researchers to tackle complex health and social care challenges;
Collaborating with other public funders, charities and industry to help shape a cohesive and globally competitive research system;
Funding applied global health research and training to meet the needs of the poorest people in low and middle income countries.
NIHR is funded by the Department of Health and Social Care. Its work in low and middle income countries is principally funded through UK Aid from the UK government.