Rare diseases

Rare rheumatic diseases linked to higher mortality during COVID-19 pandemic


The risk of death rose more among people with rare autoimmune rheumatic diseases (RAIRD) than the general population during the COVID-19 pandemic, according to a UK study.

“People with rare diseases often have poorer health outcomes generally, so we wanted to find out what impact the COVID-19 pandemic has had,” said study senior author Dr Fiona Pearce, of the University of Nottingham.

“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.”

Among a total group with a recorded RAIRD diagnosis of 168,691 people, 1,815 individuals died during March and April of this year (1.1%). The most common of the 17 included RAIRD diagnoses in the cohort included giant cell arteritis (22.1%) and systemic lupus erythematosus (21.6%).

Importantly, the study, which was published in Rheumatology was not designed to determine whether the increase in mortality was due to COVID-19 infections themselves.

The age-standardised mortality rate (ASMR) among those with a RAIRD diagnosis was 3,669.3 per 100,000 person-years; this was 1.44 times higher than the average ASMR during the same months during the previous five years.

Meanwhile, 2020’s ASMR for the general population of England rose less, by 1.38 times compared to previous years, from 983.3 to 1,361 per 100,000 person-years.

Age-specific mortality rates were higher during the pandemic compared with previous years beginning at age 35 and upwards for those with a RAIRD diagnosis; in the UK population at large, this jump in mortality only emerged at age 55 and upwards.

“The next steps in our research is to look at death certificate data and find out why people have died,” Dr Pearce said. “We’ll be examining whether it’s due to COVID-19 infection or how much is due to the disruption to healthcare services.”

Dr Sanjeev Patel, of King’s College Hospital and current president of the British Society for Rheumatology, said in an interview with the limbic that the possibility of disruptions to care being the cause of the increase was “of great concern.”

Dr Patel, who was not involved in the study,  said the study is useful because other research of rheumatoid conditions and COVID-19, such as that from EULAR, has focused on populations with large proportions of the more common conditions such as rheumatoid arthritis. A report from EULAR in June found no increased risk among those with rheumatic musculoskeletal disorders for contracting the coronavirus, nor worse prognosis if it was contracted.

By focusing on the rare conditions, the new data may allow clinicians to adjust treatments, recommend changes to behaviour, and other actions to try and reduce COVID-19-related risk. Dr Patel stressed that a better understanding of the causes of mortality will be needed in order to make those determinations.

“There are more questions, and more work to be done,” he said, adding that the data does not really allow for a hierarchy of risk, meaning if a particular rare condition confers higher risk than another. “But in terms of the absolute risk of death, is it increased or not? There is a signal here that it is.”

“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 policy-makers on what healthcare services to focus on, as well as any future priorities for a COVID-19 vaccine.”

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