SLE is an unpredictable disease that can lead to organ failure and premature death, and yet there is little data and no clear diagnostic and management guidelines within Aotearoa New Zealand.
Professor Ross Lawrenson and Dr Rawiri Keenan.
University of Waikato Professor of Population Health, Dr Ross Lawrenson, is leading the research project.
“SLE patients presenting at hospitals are usually experiencing serious complications such as lupus nephritis which can lead to impaired kidney function or even kidney failure. We need the data at general practice level to find pathways to reduce hospitalisation rates,” says Dr Lawrenson.
SLE is a disease in which a person’s immune system mistakenly attacks their own healthy tissue. Symptoms of SLE commonly include arthritic-like joint swelling and pain, fatigue, skin rashes and urinary symptoms.
The disease is more common in women and is usually diagnosed in people aged 15 to 45 years old. Most cases are confirmed by a specialist rheumatologist or renal physician.
There is no treatment for lupus and management is vital for patients to lead relatively normal lives.
Dr Jenny Wong
Dr Lawrenson is working with a team of researchers from the University, medical practitioners working at the front end of health services, and community health groups. The core research is being undertaken by GP Dr Jenny Wong. Dr Wong will work with GP databases across a selection of Waikato practices to understand diagnosis rates, the time between the first presentation of symptoms, and diagnosis by age, gender and ethnicity and other metrics.
“It’s invaluable being able to get funding support from Arthritis NZ. It enables us to facilitate GPs like Dr Wong to get involved in research that helps their day-to-day practice. Building strong links between health providers, and the University results in robust research with practical outcomes that makes a difference for individual patients,” says Professor Lawrenson.
Biostatistician and Senior Research Fellow Dr Chunhuan Lao, who holds an Arthritis NZ Fellowship for research into SLE, is providing project design and statistical support. Te Whatu Ora (Waikato) Rheumatologist, Dr Douglas White, and Dr Lawrenson are specialist advisors. Associate Professor of Primary Care, Dr Rawiri Keenan, and local Waikato Māori health providers round out the team.
“We know from earlier work that Lupus nephritis is more common among Māori and Pacific Island children. It is associated with a significant incidence of end stage kidney disease and mortality, with some tamariki showing rapid disease progression,” says Dr Keenan.
Dr Lawrenson adds: “By using an equity lens we can explore whether there are differences in the diagnostic pathways, referral to specialist care and management of Māori SLE. If higher rates in Māori are evidenced by the new data, there will be other important equity questions to answer.”
Dr Chunhuan Lao
The study builds upon earlier research at the University where Dr Lao worked with hospital records to identify SLE statistics. Her research showed approximately 42 people in every 100,000 have SLE in NZ. The data also showed higher rates in women, Māori, and Pacific people. Further SLE patients have a mortality rate four times that of the general population.
Dr Lao presented these findings in August 2023 at the New Zealand Rheumatology Association Annual Scientific Meeting where she was awarded the Best Presentation on Lupus.
The two-year study will provide essential information on the burden of disease from SLE and help to establish guidelines for the diagnosis and management of this chronic condition.
