A recent study found people with long Covid often have a lower health-related quality of life and worse fatigue than those with some advanced cancers, while overall, impact on daily activities was worse than for stroke patients and comparable to Parkinson’s sufferers.
The study, led by researchers at University College London (UCL) and the University of Exeter, found that many people were seriously ill and had fatigue scores worse than or similar to people with cancer-related anaemia or severe kidney disease, and that their health-related quality of life scores were also lower than those of people with advanced metastatic cancers, like stage four lung cancer.
Study co-author Professor William Henley of Exeter University medical school, said: “Long Covid is an invisible condition, and many people are left trying to manage significant changes to how they can function.
“Shockingly, our research has revealed that long Covid can leave people with worse fatigue and quality of life than some cancers, yet the support and understanding is not at the same level. We urgently need more research to enable the development of evidence-based services to support people trying to manage this debilitating new condition.”
Earlier research suggests that up to about 17% of people who get Covid develop long Covid.
The UCL and Exeter research, published in the journal BMJ Open, looked at more than 3 750 patients who were referred to a long Covid clinic after experiencing symptoms for at least 12 weeks after infection.
Patients had to complete questionnaires on an app about how long Covid was affecting them, including its impact on their day-to-day activities, levels of fatigue, depression, anxiety, breathlessness, brain fog, and their quality of life.
More than 90% of those using the app were 18-65, with 51% saying they had been unable to work for at least one day in the previous month, and 20% unable to work at all. Nearly three-quarters (71%) of the patients were female.
Dr Henry Goodfellow, a researcher at the UCL Institute of Epidemiology and Health who co-led the study, said: “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.”
Study details
Impact of fatigue as the primary determinant of functional limitations among patients with post-COVID-19 syndrome: a cross-sectional observational study
Sarah Walker, Henry Goodfellow, Patra Pookarnjanamorakot, Elizabeth Murray,
Julia Bindman, Ann Blandford, Katherine Bradbury, Belinda Cooper, Fiona Hamilton, John Hurst, Hannah Hylton, Stuart Linke, Paul Pfeffer, William Ricketts, Chris Robson, Fiona Stevenson, David Sunkersing, Jiunn Wang, Manuel Gomes, William Henley.
Published in BMJ Open in June 2023
Abstract
Objectives
To describe self-reported characteristics and symptoms of treatment-seeking patients with post-COVID-19 syndrome (PCS). To assess the impact of symptoms on health-related quality of life (HRQoL) and patients’ ability to work and undertake activities of daily living.
Design
Cross-sectional single-arm service evaluation of real-time user data.
Setting
31 post-COVID-19 clinics in the UK.
Participants
3754 adults diagnosed with PCS in primary or secondary care deemed suitable for rehabilitation.
Intervention
Patients using the Living With Covid Recovery digital health intervention registered between 30 November 2020 and 23 March 2022.
Primary and secondary outcome measures
The primary outcome was the baseline Work and Social Adjustment Scale (WSAS). WSAS measures the functional limitations of the patient; scores of ≥20 indicate moderately severe limitations. Other symptoms explored included fatigue (Functional Assessment of Chronic Illness Therapy–Fatigue), depression (Patient Health Questionnaire–Eight Item Depression Scale), anxiety (Generalised Anxiety Disorder Scale, Seven-Item), breathlessness (Medical Research Council Dyspnoea Scale and Dyspnoea-12), cognitive impairment (Perceived Deficits Questionnaire, Five-Item Version) and HRQoL (EQ-5D). Symptoms and demographic characteristics associated with more severe functional limitations were identified using logistic regression analysis.
Results
3541 (94%) patients were of working age (18-65); mean age (SD) 48 (12) years; 1282 (71%) were female and 89% were white. 51% reported losing ≥1 days from work in the previous 4 weeks; 20% reported being unable to work at all. Mean WSAS score at baseline was 21 (SD 10) with 53% scoring ≥20. Factors associated with WSAS scores of ≥20 were high levels of fatigue, depression and cognitive impairment. Fatigue was found to be the main symptom contributing to a high WSAS score.
Conclusion
A high proportion of this PCS treatment-seeking population was of working age with over half reporting moderately severe or worse functional limitation. There were substantial impacts on ability to work and activities of daily living in people with PCS. Clinical care and rehabilitation should address the management of fatigue as the dominant symptom explaining variation in functionality.
See more from MedicalBrief archives:
UK analysis confirms risk factors for long Covid
Impaired lung function in 25% of long Covid patients – Dutch study
Most long Covid symptoms go after a year – large Israeli cohort study
More than half of patients suffer long Covid symptoms – SA study