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General practitioners in England may not recognize thousands of cases of long Covid, according to research which raises questions about how the disease is diagnosed, recorded and managed in the NHS.
Researchers at the University of Oxford analyzed the GP records of nearly 58 million people in England from February 2020 to April 2021 and found that only 23,273 had a formal diagnosis of long Covid in their medical notes.
The number is nearly 100 times lower than the 2 million adults estimated to have had Covid for a long time in a major survey released last week by scientists at Imperial College London. The React-2 survey found that people with long-lasting Covid tended to fall into two groups: those with persistent breathing problems and those with fatigue-related illness.
Dr Ben Goldacre, who led the latest study at Nuffield’s primary care health sciences department in Oxford, said he was surprised that GPs had recorded so few cases compared to the results of the investigation. “It is an extraordinary gap to be found between survey data and formal diagnostic records,” he said.
Using a secure computer system called OpenSAFELY, scientists searched medical records for formal diagnostic codes that general practitioners are supposed to use when they note that a patient has long Covid. They found that more than a quarter (26.7%) of GP practices in England had never used them.
There were marked geographic differences, with general practitioners in London recording around 56 cases per 100,000 patients, almost three times the 20 per 100,000 patients in the east of England. Almost twice as many cases have been recorded in women than in men.
The appearance of long Covid on patient charts also varied depending on the software used by general practitioner offices. Those who recorded patient notes on a system called Emis were more than twice as likely to include a formal code for the long Covid than those who used an alternative called TPP. “This strongly suggests that there is a very big difference in how these software systems maybe prompt you to enter a long Covid diagnosis,” Goldacre said.
The study, published in the British Journal of General Practice, raises particular concerns about the long formal Covid codes developed by NHS Digital, which do not contain the word ‘long’ or the word ‘Covid’.
“If clinical terminologists have a preferred word form that’s fine, but they’re going to have to invest a tremendous amount of time and effort to market their preferred expression to users,” Goldacre said.
Researchers point out that there are multiple reasons why GP records contain so few formal diagnoses of long Covid. Patients may not go to their GP to describe their conditions, GPs may set a higher bar for diagnosing the disease than patients, and GPs may not register cases correctly.
Goldacre said that whatever the cause, the problem is impacting research and clinical management of the long Covid.
Dr David Strain, clinical manager of Covid services at the Royal Devon and Exeter NHS Foundation Trust, who was not involved in the study, said that finding that only around 1.5% of people who have or had Covid for a long time were correctly coded was a concern.
“First, unless we know how common the disease is, we cannot determine what resources will be needed to manage the disease in the future,” he said. “Second, we need a systematic understanding of who gets Covid for a long time, in order to identify groups at risk. This will be especially important if there are new waves of vaccine-resistant mutations, given the potential personal and economic impact of Covid in the long term.
“Last but not least, it suggests that the disease is underestimated and therefore people with the disease do not have access to the help available.”
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