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Long COVID cases under-reported in NHS GP records, study finds

Researchers say results raise important questions about how disease is diagnosed, recorded and managed by NHS

Samuel Osborne
Wednesday 30 June 2021 08:59 EDT
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Long Covid symptoms vary but commonly include breathlessness, headaches, cough, fagitue and ‘brain fog’
Long Covid symptoms vary but commonly include breathlessness, headaches, cough, fagitue and ‘brain fog’ (Dominic Lipinski/PA)

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Cases of Long Covid are under reported in NHS GP records, researchers have found.

Through analysing the GP records of 57.9 million patients in England, they found formally recorded diagnoses of Long Covid are substantially lower than previous survey estimates.

The researchers say the results raise important questions about how the disease is diagnosed, recorded and managed by the NHS.

Numerous recent studies using questionnaires to determine the prevalence of Long Covid suggest approximately 2 million people have the condition, with between 7.8 and 17 per cent of Covid patients experiencing symptoms for more than 12 weeks.

However, in a study published in the British Journal of General Practice, researchers from Oxford University and the London School of Hygiene and Tropical Medicine found only 23,273 cases were formally recorded between February 2020 and April 2021, in a sample covering 96 per cent of the population.

The number of cases ranged from 20.3 per 100,000 people in the East of England, to 55.6 per 100,000 in London, with 52.1 cases per 100,000 women compared with 28.1 cases per 100,000 men.

The levels of reporting also varied between GP practices and with the type of computer-based systems used by GPs to record patient information.

The researchers suggested the significant discrepancy may be because patients have not yet visited primary care with Long Covid, or because clinicians and patients hold different diagnostic criteria for using the diagnoses, as well as issues about how the diagnosis is recorded in computer systems.

Lead researcher Dr Ben Goldacre from the University of Oxford’s Nuffield Department of Primary Care Health Sciences, said: ‘We were very surprised to see almost a hundred-fold difference in prevalence between population survey estimates and formally recorded diagnoses for the same condition. Good data on Long Covid will be crucial for research into the prevalence of Long Covid, its causes and consequences, and to plan services effectively.

'Since initially publishing a pre-print of this research in May, we have taken our findings to the National Institute for Health and Care Excellence (NICE), NHS England, and GP software systems designers and have had extensive conversations about how to address the issues highlighted by this research.’

Long Covid has been defined as a continuation of the symptoms of Covid-19 for more than four weeks.

Reported symptoms vary but commonly include breathlessness, headaches, cough, fagitue and “brain fog”.

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