According to recent estimates from the Office for National Statistics, as of March 2023, approximately 1.7 million individuals in the United Kingdom are living with self-reported long COVID. This debilitating condition refers to a range of symptoms that persist for more than 12 weeks following the initial COVID infection, including fatigue, brain fog, and numerous others.
The prevalence of long COVID has become a major cause for concern both in the UK and globally, given the substantial number of people affected. Ongoing research and anecdotal evidence indicate that the condition can lead to severe symptoms. However, there remains a significant knowledge gap regarding the impact of long COVID on patients’ ability to perform daily activities.
A groundbreaking study conducted by a team of researchers has shed new light on the effects of long COVID. The study reveals that the condition can induce fatigue and impair a person’s daily functioning to a greater extent than certain cancers.
Fatigue emerged as the primary symptom driving the decline in the day-to-day capacity of long COVID patients, underscoring its importance in clinical care and the design of rehabilitation services.
In August 2020, an ambitious project was initiated with the aim of creating a digital health intervention to remotely support long COVID patients. Led by the late Professor Elizabeth Murray, a large multidisciplinary team embarked on a two-year endeavor. The team collaborated with over 8,000 patients from 35 different NHS long COVID clinics across the UK, utilizing a mobile phone app called “Living With COVID Recovery.”
Through the app, patients were encouraged to complete questionnaires detailing the impact of long COVID on various aspects of their lives. These questionnaires covered day-to-day activities, levels of fatigue, depression, anxiety, breathlessness, and brain fog. The collected data enabled patients to monitor their symptoms over time, while clinicians could remotely monitor and support their patients.
Additionally, the questionnaires generated standardized scores for each symptom, allowing clinicians to compare the long COVID scores with those of patients suffering from other diseases, as documented in previous research.
Data Analysis William Henley and Sarah Walker from the University of Exeter meticulously analyzed the questionnaires completed by the first 3,754 patients who utilized the app. The findings from this cohort form the basis of the study.
The analysis revealed that many long COVID patients experienced severe illness, often impeding their ability to perform routine tasks such as household chores or caregiving. The extent of functional impairment observed in these patients was comparable to that seen in individuals who had suffered a stroke or were diagnosed with Parkinson’s disease.
Among all the symptoms investigated, fatigue demonstrated the most significant impact on the daily lives of long COVID patients. On average, their fatigue scores were similar to, or even worse than, those of individuals with cancer-related anemia or severe kidney disease. The long COVID patients reported health-related quality of life scores lower than individuals with advanced metastatic cancers, such as stage 4 lung cancer.
While the average long COVID patient in the study also experienced anxiety, depression, breathlessness, and brain fog, these symptoms were not closely associated with an inability to perform everyday activities, unlike fatigue.
Beyond the Individual Long COVID is likely to exert a substantial economic and social toll. Of the 3,754 patients enrolled in the study, 94% were of working age, with 51% reporting missing at least one day of work in the previous month due to their symptoms. Furthermore, 20% indicated they were unable to work at all during that period.
Notably, 71% of the patients reporting symptoms were women. As women often bear more responsibilities at home and are more likely to work in caregiving professions, the social impact of long COVID is expected to be significant.
Two main limitations were identified in the study. Firstly, the sample only included patients who had been seen in long COVID clinics, which may not be representative of all individuals with long COVID. Many sufferers may not have been referred to a clinic, indicating potential underrepresentation. Additionally, the majority of participants in the study were white, well-off, and well-educated, despite long COVID being more prevalent in socioeconomically deprived areas. It is crucial to acknowledge that individuals with different characteristics, such as non-white individuals, those with lower socioeconomic status, or lower levels of education, may have different experiences and seek healthcare differently.
The second limitation pertains to the data collection process, which primarily aimed at clinical assessment and treatment rather than research. Consequently, there were substantial missing data as non-clinically essential information was not systematically collected. Participants were not asked about the severity of their initial COVID infection or their vaccination status to avoid overburdening long COVID patients with excessive questions.
Nevertheless, the researchers hope that their findings will contribute to the understanding of the significant impact long COVID has on patients’ well-being. The study emphasizes the importance of assessing and addressing fatigue in post-COVID assessment services to facilitate optimal recovery and reintegration into the workforce for long COVID sufferers.
The implications of long COVID extend beyond individual health, affecting the economy and society at large. With the majority of patients in the study being of working age, the high rates of work absenteeism and inability to work indicate potential economic repercussions. Moreover, the disproportionate representation of women among long COVID patients highlights the additional burden placed on them due to societal roles and responsibilities.
The study’s authors recognize the need for further research to encompass a broader spectrum of long COVID patients and capture a more diverse range of experiences. Comprehensive data collection, considering various demographic factors and systematically gathering information, will enable a more accurate understanding of the condition and inform targeted interventions and support services.
As the prevalence of long COVID continues to pose challenges to healthcare systems worldwide, this study underscores the pressing need for comprehensive care strategies that address the multifaceted nature of the condition. By prioritizing the management of fatigue and tailoring rehabilitation services accordingly, healthcare professionals can better support long COVID patients in their journey toward recovery and improve their overall quality of life.
In conclusion, long COVID is an ongoing concern affecting a significant number of individuals in the UK. This study highlights the detrimental impact of fatigue on patients’ daily functioning and emphasizes the importance of addressing this symptom in clinical care. By recognizing the broad-ranging effects of long COVID, both individually and societally, healthcare providers and policymakers can implement targeted interventions to alleviate the burden on patients and promote their well-being.