People with rare autoimmune rheumatic diseases have been at greater risk of dying during the COVID-19 pandemic than the general population, according to a study published today.
The findings from the RECORDER (Registration of Complex Rare Diseases Exemplars in Rheumatology) project found that people from the age of 35 with conditions such as lupus, vasculitis, scleroderma, myositis and juvenile idiopathic arthritis, had a greater risk of dying compared to people aged 55 and over in the general population.
The research team from the University of Nottingham and the National Disease Registration Service at Public Health England studied electronic health records of nearly 170,000 people in England with rare autoimmune rheumatic diseases.
They found that during March and April 2020, 1,815 (1.1%) people with these diseases died, which was 1.44 times higher than the average during the same months of the previous five years.
By comparison, deaths among the general population of England were 1.38 times higher.
However, it is not known if the death rate was higher because of COVID-19 or due to a disruption in healthcare services.
Writing in Rheumatology, the research team say that women with rare autoimmune rheumatic diseases had a similar risk of death to men during COVID-19, where their risk of death is usually lower; and that the risk of working age people with rare autoimmune rheumatic diseases dying during the first lockdown period was similar to that of someone 20 years older in the general population.
Study co-author, Dr Fiona Pearce from the University of Nottingham, said: “People with rare diseases often have poorer health outcomes generally, so we wanted to find out what impact the COVID-19 pandemic has had. From our study we know that during the early months of the pandemic, people with these diseases were more likely to die than the general population.
“The next steps in our research is to look at death certificate data and find out why people have died. We’ll be examining whether it’s due to COVID-19 infection or how much is due to the disruption to healthcare services.
“Our study doesn’t show the effects of shielding and what impact it may have had. Our future work will examine this and explore what shielding information should be given to patients. Our studies will help steer clinicians and policymakers on what healthcare services to focus on, as well as any future priorities for a COVID-19 vaccine.”
Dr Sanjeev Patel, president of the British Society for Rheumatology, added: “These results are incredibly important to the rheumatology community. These conditions might be rare, but when we look at them together it’s a significant number of people.
“This is a large study which shows for the first time that a subgroup of patients in our care are at an increased risk of dying during the pandemic and at a much younger age. We don’t yet know the reasons why, but this study brings into sharp focus the need to be more vigilant with these patients and it should help inform future shielding advice.”
Peach EJ, Rutter M, Lanyon PC et al. Risk of death among people with rare autoimmune diseases compared to the general population in England during the 2020 COVID-19 pandemic. Rheumatology 4 December 2020.
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