Formal long Covid diagnoses by GPs and within secondary care are much lower than survey data has suggested, according to research that raises questions around how the condition is being diagnosed, recognised and recorded within the NHS.
Recent estimates based on the REACT-2 survey data have suggested that as many as two million people in England could have long Covid, or a range of lingering symptoms following a Covid-19 infection.
However, researchers at Oxford University and the London School of Hygiene and Tropical Medicine have highlighted that this doesn’t tally with the numbers of cases being formally recorded as having been diagnosed, which appear to be much lower.
Their study, published in the British Journal of General Practice, found that only 23,273 cases of long Covid were formally recorded by GPs 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.
There were 52.1 cases per 100,000 women compared with 28.1 cases per 100,000 men.
Their study involved the analysis of the electronic health records of 57.9 million patients in England. Levels of long Covid reporting also varied greatly between GP practices and with the type of computer systems to record patient information.
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The researchers said the possible reasons for the discrepancy between survey data and patient records included patients not seeing their GP about possible long Covid; different clinicians and patients holding different diagnostic thresholds for long Covid; and issues around how the diagnosis is being recorded in computer systems.
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.
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“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.”
The researchers said that, due to limited knowledge about long Covid, health authorities have not been able to issue clinical guidelines, create and communicate new diagnostic codes for use in GP computer systems, or communicate the current evidence relating to the condition to doctors.