An online survey among those with long COVID has found that the over 90% continue to experience a wide range of symptoms for over 35 weeks.
While early in the COVID-19 pandemic, there was considerable focus on mortality, an emerging theme has been the presence of prolonged symptoms, even among those with mild disease and which has been termed long COVID. However, a precise definition of long COVID has remained elusive and a wide range of symptoms have been ascribed to the condition. In the US, the Centers for Disease Control and Prevention have preferred the term “post-COVID conditions”, as an umbrella term for the wide range of health consequences that are present four of more weeks after infection with the virus. In trying to more clearly define the patient experience and recovery process, a team from Sainsbury Wellcome Centre, University College London, UK, conducted an online survey among those who have suffered with long COVID symptoms. The aim was to better understand the lived experience with an emphasis on symptom trajectory and severity over time and the return to baseline. The research team worked closely with a patients who had themselves suffered with COVID-19 and who helped to create the survey. In addition, the researchers worked with a number of other patients to compile the list of symptoms and questions related to how long COVID symptoms impacted on daily life. The final survey included 257 questions that required over an hour to complete although respondents were permitted up to 30 days to complete it. Though created in English, the questionnaire was translated into several other languages including Spanish, French, Portuguese, Italian, Dutch and Russian. It was distributed via support groups e.g., Body Politic, Long COVID Support Group and social media, e.g., Twitter, Facebook and data collected between September 2020 and November 2020. The team quantified disease duration, severity and symptom prevalence and respondents were asked to indicate the number of days that each of a listed number of symptoms persisted.
There were 3,762 usable responses received from predominately women (78.9%), of white ethnicity (85.3%) with the highest proportion (31%) aged between 40 and 49 years. Overall, 91.9% of respondents answered the questions in English. For the complete cohort, 2454 individuals (65%) experienced symptoms which lasted for at least six months and the authors calculated the probability of symptoms lasting beyond 35 weeks as 91.8%. Symptoms affected 10 different organ systems and the most frequent still present after 6 months were fatigue (>95%), post-exertional malaise (approx. 90%) and cognitive dysfunction (88%). Moreover, 85.9% of respondents experienced a relapse of long COVID symptoms often triggered by exercise (70.7%), mental activities (46.2%) and stress (58.9%) and 45.2% had to reduce their work schedule because of symptoms.
Commenting on these findings, the authors reported on how long COVID symptoms appeared to be a heterogenous mix affecting many different organ systems. The authors also felt that the morbidity of COVID-19 has often been greatly overlooked and created a hugely negative impact upon sufferers’ quality of life, highlighting the need for multidisciplinary research to develop effective treatments.
Davis HE et al. Characterising long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine 2021.