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Patient Symptoms and Experience Following COVID-19: Results from a UK Wide Survey

31 Pages Posted: 26 Apr 2021

See all articles by Sara Buttery

Sara Buttery

Imperial College London

Keir Philip

Imperial College London

Parris Williams

Imperial College London - National Heart and Lung Institute (NHLI)

Andrea Fallas

Asthma UK and British Lung Foundation Partnership

Brigitte West

Asthma UK and British Lung Foundation Partnership

Andrew Cumella

Asthma UK and British Lung Foundation Partnership

Cheryl Cheung

Asthma UK and British Lung Foundation Partnership

Samantha Walker

Asthma UK and British Lung Foundation Partnership

Jennifer Quint

Imperial College London - National Heart and Lung Institute

Michael Polkey

Government of the United Kingdom - Royal Brompton Hospital

Nicholas S. Hopkinson

Imperial College London - National Heart and Lung Institute

More...

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 (quantitative and qualitative) of responses to a survey accessed through a UK online post-COVID support and information hub between April 2020 and December 2020 about people’s experiences after having acute COVID-19.ParticipantsOf 3290 respondents, 78% were female, median age range 45-54 years, 92.1% reported white ethnicity; 12.7% had been hospitalised. 494 respondents (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%) more than 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; (3) Implications for the future – their own condition, society and the healthcare system and the need for research.

Conclusion: People living with persistent problems after the acute phase of COVID-19 report multiple and varying symptoms that are not necessarily associated with initial disease severity or the presence of pre-existing health conditions. Many have substantial unmet needs and experience barriers to accessing healthcare. Consideration of patient perspective and experiences will assist in the planning of services to address this.

Funding Statement: KP was supported by the Imperial College Clinician Investigator Scholarship. KP would like to acknowledge the National Institute for Health Research (NIHR) Biomedical Research Centre based at Imperial College Healthcare NHS Trust and Imperial College London for their support. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health

Declaration of Interests: None declared.

Ethics Approval Statement: Ethical approval was granted by the Imperial College Research Governance and Integrity Team (RGIT) (ICREC Ref: 20IC6625). All survey respondents consented to the use of their responses for analysis and publication.

Keywords: COVID, symptoms, long-COVID, patient experience

Suggested Citation

Buttery, Sara and Philip, Keir and Williams, Parris and Fallas, Andrea and West, Brigitte and Cumella, Andrew and Cheung, Cheryl and Walker, Samantha and Quint, Jennifer and Polkey, Michael and Hopkinson, Nicholas S., Patient Symptoms and Experience Following COVID-19: Results from a UK Wide Survey. Available at SSRN: https://ssrn.com/abstract=3834303 or http://dx.doi.org/10.2139/ssrn.3834303

Sara Buttery (Contact Author)

Imperial College London

South Kensington Campus
Exhibition Road
London, SW7 2AZ
United Kingdom

Keir Philip

Imperial College London

South Kensington Campus
Exhibition Road
London, SW7 2AZ
United Kingdom

Parris Williams

Imperial College London - National Heart and Lung Institute (NHLI)

Emmanuel Kaye Building
London, SW3 6LR
United Kingdom

Andrea Fallas

Asthma UK and British Lung Foundation Partnership ( email )

London
United Kingdom

Brigitte West

Asthma UK and British Lung Foundation Partnership ( email )

London
United Kingdom

Andrew Cumella

Asthma UK and British Lung Foundation Partnership

London
United Kingdom

Cheryl Cheung

Asthma UK and British Lung Foundation Partnership ( email )

London
United Kingdom

Samantha Walker

Asthma UK and British Lung Foundation Partnership

London
United Kingdom

Jennifer Quint

Imperial College London - National Heart and Lung Institute ( email )

Guy Scadding Building, Cale Street
London, SW3 6LY
United Kingdom

Michael Polkey

Government of the United Kingdom - Royal Brompton Hospital

Sydney St.
London, SW3 6NP
United Kingdom

Nicholas S. Hopkinson

Imperial College London - National Heart and Lung Institute ( email )

Guy Scadding Building, Cale Street
London, SW3 6LY
United Kingdom

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