What is this research about?
Lupus, or systemic lupus erythematosus (SLE), has been called the “disease of 1,000 faces” because it can strike people in so many ways. The disease can look different in people who developed lupus when they were kids (childhood onset) compared to later in life (adult onset), as well as in people of different ethnicities. The patterns of ethnicities reported by people with childhood- and adult-onset lupus are also different. So, it wasn’t clear whether the differences seen were directly due to the age when the disease developed.
What did the researchers do?
To answer questions like this, a network of lupus researchers has been studying over 1,000 Canadians with lupus at 14 clinics across the country since 2005. This “1,000 Canadian Faces of Lupus” project resulted in a database full of factors that might influence lupus severity and symptoms. In this part of the study, the researchers tried for the first time to unravel whether there were differences in childhood- and adult-onset lupus independent of ethnicity as reported on a patient questionnaire.
What did they find?
The researchers found that lupus looked clinically different when it started in kids compared to adults across many ethnicities. Unexpectedly, the differences seen were not explained by ethnicity alone. They also weren’t fully explained by where the person was treated or how long they had the disease.
How can this research be used?
These findings reinforce that lupus can affect people very differently across our diverse and multi-ethnic country. This gives rheumatologists clues about what to look out for in their lupus patients – young and old – to give them the best care possible. It also raises important questions for researchers to tackle now about what other reasons might help explain the difference between childhood- and adult-onset lupus, like social or economic factors.
What impact could this have?
Understanding fundamental differences between the impact of lupus that started in childhood or adulthood could reveal ways to improve the diagnosis of this complex disease, which can be tricky. It may also eventually shed light on new treatment strategies for each of these two groups. This could change the lives of the 1 in every 1,000 to 2,000 Canadians with lupus, 90% of whom are women or girls.
About the researchers
The 1,000 Canadian Faces of Lupus project was supported by an Arthritis Society Canada research grant awarded to Dr. Christine Peschken in 2005. Dr. Peschken, a rheumatologist and associate professor at the University of Manitoba, led researchers from the Canadian Network for Improving Outcomes in Systemic Lupus Erythematosus (CaNIOS) to produce several discoveries on what lupus looks like and how it acts.
Dr. Janet Pope, a rheumatologist and professor at Western University, was the lead CaNIOS researcher for the team’s study on age of lupus onset and ethnicity. Dr. Pope’s early introduction to research was supported by an Arthritis Society Canada Research Fellowship, and she has been actively engaged over many years as the leader of the Arthritis Centre at St. Joseph’s Health Care London and Western University.
Researcher Reflection
It is so important to have research in Canada in lupus as patients are from different regions and ethnicities and we have centres of excellence in lupus throughout the country. However, there are differences in access to healthcare and reimbursement of medications between regions in Canada.
– Dr. Janet Pope, Western University
It is very important that Canadian lupus research reflects the diversity of our population. We have now built on the 1,000 Faces project with a web-based national registry to continue studying this diversity and learning from it. Without Arthritis Society Canada funding for the initial project, this would not have been possible.
– Dr. Christine Peschken, University of Manitoba
Real-world Reaction
Lupus is a disease with a thousand faces because it mimics other disease symptoms. This research is an important step towards getting lupus properly diagnosed and treated, so that patients can look forward to living a normal life.
– Helen, living with lupus