Review shows under-reported cases of long COVID in NHS records

Review shows under-reported cases of long COVID in NHS records
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A review of fully pseudonymised GP records of 57.9 million patients in England has shown that cases of Long COVID are being under-reported in NHS GP records.

A team of researchers at Oxford University and the London School of Hygiene and Tropical Medicine have found that recorded diagnoses of Long COVID are significantly lower than previous survey estimates for the same condition. This finding raises important questions about how the condition is diagnosed, recorded, and managed in the NHS.

A number of recent studies have used questionnaire research methods to determine the prevalence of Long COVID, with the most recent estimates suggesting that approximately 2 million people have the condition (REACT2) and that between 7.8% and 17% of COVID patients experience symptoms for more than 12 weeks (National Core Studies Programme).

Recorded cases of Long COVID

In contrast to the REACT2 findings, an analysis across the full electronic health records of 57.9 million patients in England, in a study published in the British Journal of General Practice, found only 23,273 cases formally recorded between February 2020 and April 2021, in a sample covering 96% of the population.

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

In the paper, the researchers suggest the discrepancy between the data from the survey and patient records may be attributable to a range of factors such as patients not yet presenting to primary care with Long COVID; different clinicians and patients holding different diagnostic thresholds or criteria for using the diagnosis; and issues around how the diagnosis is being 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.”

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