A new study has shown that people living with rare autoimmune diseases are at heightened risk of dying during COVID-19, a finding that can help inform future shielding advice.
The findings are from the joint University of Nottingham and the National Disease Registration Service at Public Health England project – Registration of Complex Rare Diseases Exemplars in Rheumatology (RECORDER) and has been published in the British Society for Rheumatology‘s journal Rheumatology.
Study co-author, Dr Fiona Pearce from the School of Medicine at 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 are 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.”
Higher risk of death for young people
There has been limited research so far on the risks from COVID-19 to people living with rare autoimmune diseases. This study looked at the health records of 170,000 people in England living with such conditions and found that 1,815 (1.1%) people with these diseases died during the first two months of the pandemic.
It also found that women with these conditions has a similar risk of death as men, whereas it is normally lower, the risk of death increased from the age of 35, and young people living with these types of conditions had as much risk of death from COVID-19 as someone 20 years older.
Paul Howard, Chief Executive of Lupus UK, said: “This study is an important step in helping us to understand the impact of the COVID-19 pandemic on people with rare autoimmune rheumatic conditions in the UK. The findings demonstrate that, as a group, people with conditions such as lupus have been disproportionately impacted and therefore the provision of additional support is necessary.
“We hope that the next steps of this research will lead to a clearer understanding about whether COVID-19 or other factors caused the increased mortality, and also whether other health and quality of life measures have been disproportionately affected in these patient groups.”
Dr Peter Lanyon, Consultant Rheumatologist at Nottingham University Hospitals NHS Trust, noted that more support is needed for people with rare autoimmune rheumatic diseases.
Dr Sanjeev Patel, President of the British Society for Rheumatology, said: “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.”