Patient symptoms and experience following COVID-19: results from a UK-wide survey

Sara Buttery, Keir E J Philip, Parris Williams, Andrea Fallas, Brigitte West, Andrew Cumella, Cheryl Cheung, Samantha Walker, Jennifer K Quint, Michael I Polkey, Nicholas S Hopkinson, Sara Buttery, Keir E J Philip, Parris Williams, Andrea Fallas, Brigitte West, Andrew Cumella, Cheryl Cheung, Samantha Walker, Jennifer K Quint, Michael I Polkey, Nicholas S Hopkinson

Abstract

Objectives: To investigate the experience of people who continue to be unwell after acute COVID-19, often referred to as 'long COVID', both in terms of their symptoms and their interactions with healthcare.

Design: We conducted a mixed-methods analysis of responses to a survey accessed through a UK online post-COVID-19 support and information hub, between April and December 2020, about people's experiences after having acute COVID-19.

Participants: 3290 respondents, 78% female, 92.1% white ethnicity and median age range 45-54 years; 12.7% had been hospitalised. 494(16.5%) completed the survey between 4 and 8 weeks of the onset of their symptoms, 641(21.4%) between 8 and 12 weeks and 1865 (62.1%) >12 weeks after.

Results: The ongoing symptoms most frequently reported were: breathing problems (92.1%), fatigue (83.3%), muscle weakness or joint stiffness (50.6%), sleep disturbances (46.2%), problems with mental abilities (45.9%), changes in mood, including anxiety and depression (43.1%) and cough (42.3%). Symptoms did not appear to be related to the severity of the acute illness or to the presence of pre-existing medical conditions. Analysis of free-text responses revealed three main themes: (1) experience of living with COVID-19: physical and psychological symptoms that fluctuate unpredictably; (2) interactions with healthcare that were unsatisfactory; (3) implications for the future: their own condition, society and the healthcare system, and the need for research CONCLUSION: Consideration of patient perspectives and experiences will assist in the planning of services to address problems persisting in people who remain symptomatic after the acute phase of COVID-19.

Keywords: COVID-19.

Conflict of interest statement

Competing interests: None declared.

© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Figures

Figure 1
Figure 1
Frequency of symptoms reported by post-COVID-19 survey respondents graph showing percentages of individuals with long COVID reporting each symptom. Orange bar: people hospitalised during their acute COVID-19 illness (n=417); blue bar; not hospitalised (n=2873).
Figure 2
Figure 2
Number of symptoms reported by post-COVID-19 survey respondents. Respondents reported a mean (SD) of 5.0 (2.3) symptoms.
Figure 3
Figure 3
Thematic analysis of long COVID experience.
Figure 4
Figure 4
Infographic demonstrating the recovery/cyclical nature of long COVID symptoms from the respondent perspective.

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Source: PubMed

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