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Research

Patient characteristics associated with clinically coded long COVID: an OpenSAFELY study using electronic health records

Yinghui Wei, Elsie MF Horne, Rochelle Knight, Genevieve Cezard, Alex J Walker, Louis Fisher, Rachel Denholm, Kurt Taylor, Venexia Walker, Stephanie Riley, Dylan M Williams, Robert Willans, Simon Davy, Sebastian Bacon, Ben Goldacre, Amir Mehrkar, Spiros Denaxas, Felix Greaves, Richard J Silverwood, Aziz Sheikh, Nish Chaturvedi, Angela M Wood, John Macleod, Claire Steves and Jonathan Sterne On behalf of the UK COVID-19 Longitudinal Health and Wellbeing National Core Study and CONVALESCENCE study
BJGP Open 11 June 2025; BJGPO.2024.0140. DOI: https://doi.org/10.3399/BJGPO.2024.0140
Yinghui Wei
1Centre for Mathematical Sciences, School of Engineering, Computing and Mathematics, University of Plymouth, Plymouth, United Kingdom
2Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, United Kingdom
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Elsie MF Horne
2Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, United Kingdom
3NIHR Bristol Biomedical Research Centre, Bristol, United Kingdom
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Rochelle Knight
2Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, United Kingdom
3NIHR Bristol Biomedical Research Centre, Bristol, United Kingdom
4MRC Integrative Epidemiology Unit, University of Bristol, Bristol, United Kingdom
5The National Institute for Health and Care Research Applied Research Collaboration West (NIHR ARC West) at University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, United Kingdom
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Genevieve Cezard
6Department of Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom
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Alex J Walker
7The Bennett Institute for Applied Data Science, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, United Kingdom
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  • ORCID record for Alex J Walker
Louis Fisher
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  • ORCID record for Louis Fisher
Rachel Denholm
2Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, United Kingdom
3NIHR Bristol Biomedical Research Centre, Bristol, United Kingdom
8Health Data Research UK South-West, Bristol, United Kingdom
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Kurt Taylor
2Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, United Kingdom
5The National Institute for Health and Care Research Applied Research Collaboration West (NIHR ARC West) at University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, United Kingdom
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Venexia Walker
2Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, United Kingdom
4MRC Integrative Epidemiology Unit, University of Bristol, Bristol, United Kingdom
9Department of Surgery, University of Pennsylvania Perelman School of Medicine, Philadelphia, United States
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Stephanie Riley
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Dylan M Williams
10MRC Unit for Lifelong Health and Ageing, University College London, London, United Kingdom
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Robert Willans
11National Institute for Health and Care Excellence, London, United Kingdom
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Simon Davy
7The Bennett Institute for Applied Data Science, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, United Kingdom
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Sebastian Bacon
7The Bennett Institute for Applied Data Science, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, United Kingdom
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Ben Goldacre
7The Bennett Institute for Applied Data Science, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, United Kingdom
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Amir Mehrkar
7The Bennett Institute for Applied Data Science, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, United Kingdom
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Spiros Denaxas
12Institute of Health Informatics, University College London, London, United Kingdom
13British Heart Foundation Data Science Centre, Health Data Research, London, United Kingdom
14NIHR University College London Hospitals Biomedical Research Centre (UCLH BRC), London, United Kingdom
15UCL BHF Research Accelerator, University College London, London, United Kingdom
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Felix Greaves
11National Institute for Health and Care Excellence, London, United Kingdom
16Department of Primary Care and Public Health, Imperial College London, London, United Kingdom
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Richard J Silverwood
17Centre for Longitudinal Studies, UCL Social Research Institute, University College of London, London, United Kingdom
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Aziz Sheikh
18Usher Institute, The University of Edinburgh, Edinburgh, United Kingdom
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Nish Chaturvedi
10MRC Unit for Lifelong Health and Ageing, University College London, London, United Kingdom
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Angela M Wood
6Department of Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom
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John Macleod
2Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, United Kingdom
5The National Institute for Health and Care Research Applied Research Collaboration West (NIHR ARC West) at University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, United Kingdom
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Claire Steves
19Department of Twin Research and Genetic Epidemiology, School of Life Course Sciences, King’s College London, London, United Kingdom
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Jonathan Sterne
2Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, United Kingdom
3NIHR Bristol Biomedical Research Centre, Bristol, United Kingdom
8Health Data Research UK South-West, Bristol, United Kingdom
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Abstract

Background Clinically coded long COVID cases in electronic health records are incomplete, despite reports of rising cases of long COVID.

Aim To determine patient characteristics associated with clinically coded long COVID.

Design & setting With the approval of NHS England, we conducted a cohort study using electronic health records within the OpenSAFELY-TPP platform in England, to study patient characteristics associated with clinically coded long COVID from 29 January 2020 to 31 March 2022.

Method We summarised the distribution of characteristics for people with clinically coded long COVID. We estimated age-sex adjusted hazard ratios and fully adjusted hazard ratios for coded long COVID. Patient characteristics included demographic factors, and health behavioural and clinical factors.

Results Among 17 986 419 adults, 36 886 (0.21%) were clinically coded with long COVID. Patient characteristics associated with coded long COVID included female sex, younger age (under 60 years), obesity, living in less deprived areas, ever smoking, greater consultation frequency, and history of diagnosed asthma, mental health conditions, pre-pandemic post-viral fatigue, or psoriasis. These associations were attenuated following two-doses of COVID-19 vaccines compared to before vaccination. Differences in the predictors of coded long COVID between the pre-vaccination and post-vaccination cohorts may reflect the different patient characteristics in these two cohorts rather than the vaccination status. Incidence of coded long COVID was higher in those with hospitalised COVID than with those non-hospitalised COVID-19.

Conclusions We identified variation in coded long COVID by patient characteristic. Results should be interpreted with caution as long COVID was likely under-recorded in electronic health records.

  • COVID-19
  • SARS-CoV-2
  • Long COVID
  • Received June 11, 2024.
  • Revision received December 17, 2024.
  • Accepted April 30, 2025.
  • Copyright © 2025, The Authors

This article is Open Access: CC BY license (https://creativecommons.org/licenses/by/4.0/)

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Accepted Manuscript
Patient characteristics associated with clinically coded long COVID: an OpenSAFELY study using electronic health records
Yinghui Wei, Elsie MF Horne, Rochelle Knight, Genevieve Cezard, Alex J Walker, Louis Fisher, Rachel Denholm, Kurt Taylor, Venexia Walker, Stephanie Riley, Dylan M Williams, Robert Willans, Simon Davy, Sebastian Bacon, Ben Goldacre, Amir Mehrkar, Spiros Denaxas, Felix Greaves, Richard J Silverwood, Aziz Sheikh, Nish Chaturvedi, Angela M Wood, John Macleod, Claire Steves, Jonathan Sterne
BJGP Open 11 June 2025; BJGPO.2024.0140. DOI: 10.3399/BJGPO.2024.0140

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Accepted Manuscript
Patient characteristics associated with clinically coded long COVID: an OpenSAFELY study using electronic health records
Yinghui Wei, Elsie MF Horne, Rochelle Knight, Genevieve Cezard, Alex J Walker, Louis Fisher, Rachel Denholm, Kurt Taylor, Venexia Walker, Stephanie Riley, Dylan M Williams, Robert Willans, Simon Davy, Sebastian Bacon, Ben Goldacre, Amir Mehrkar, Spiros Denaxas, Felix Greaves, Richard J Silverwood, Aziz Sheikh, Nish Chaturvedi, Angela M Wood, John Macleod, Claire Steves, Jonathan Sterne
BJGP Open 11 June 2025; BJGPO.2024.0140. DOI: 10.3399/BJGPO.2024.0140
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Keywords

  • COVID-19
  • SARS-CoV-2
  • Long COVID

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