A composite definition of low disease activity in lupus may protect against poor outcomes.
Systemic lupus erythematosus (also known as SLE or lupus) is an autoimmune disease. It typically affects women between the ages of 15 and 50, and symptoms flare up unpredictably. Lupus is caused by complicated interactions between the immune system and environmental factors leading to an imbalance in the way the immune system works. This imbalance causes inflammation which, if untreated, can lead to disability and shortened lifespan. Different factors may trigger lupus in different people, and symptoms may vary considerably. In some the illness is never life threatening, but can cause chronic skin rashes or arthritis. Others develop potentially life threatening disease in the kidneys, lungs or heart. In many diseases, having a definition of a treatment target has meant people get better care. For example, if you have high blood pressure, it is not enough to just lower it – your doctor will try to get it below a target level that has been shown to be associated with better results. Targets like these have been defined in rheumatoid arthritis as remission or ’low disease activity state’ (LDAS), but this has never been attempted in lupus.
WHAT DID THE AUTHORS HOPE TO FIND?
The authors hoped to create a definition for a lupus low disease activity state (LLDAS) that could be used as a target for treatment in people with lupus.
HOW WAS THE STUDY CONDUCTED?
This was a consensus exercise. This means that a group of lupus experts from several countries worked together to agree on a series of questions or statements to be included in a proposed definition of LLDAS. A group of 11 experts then scored each item. After two rounds of scoring, the experts had agreed on a set of five items. These items were then checked against the medical records of a group of people with lupus from a large clinic in Australia to see how well the proposed LLDAS definition worked for real patients, and whether people who achieved the LLDAS went on to have different outcomes.
WHAT WERE THE MAIN FINDINGS?
There were two main findings. The first was that a group of experts could agree on a definition of low disease activity for lupus. The second finding was that people who achieved LLDAS had better long-term outcomes than people who did not achieve LLDAS. This means that defining LLDAS is valuable to people with lupus. The proposed LLDAS includes values for disease activity and current medication.
ARE THESE FINDINGS NEW?
Yes; there has not been any attempt to define low disease activity for people with lupus before.
ARE THERE ANY LIMITATIONS?
The definition was based on expert opinion. A better definition would be one based on data, and the authors hope to be able to do that soon. The validation methods were good, but patients from one only one clinic were studied; a larger multicentre study is needed to confirm the results, and this is already underway.
WHAT DO THE AUTHORS PLAN ON DOING WITH THIS INFORMATION?
The authors are working with doctors and researchers in other clinics to do a very large study of the proposed LLDAS measure and to verify their finding that attaining LLDAS protects against poor outcomes. They are also working with pharmaceutical companies to test whether this measure can help to identify more effective therapies for lupus.
WHAT DOES THIS MEAN FOR ME?
Knowing that a certain response to treatment protects against poor outcomes means that people with lupus can ask to be treated in a specific way. This research is not yet at that stage, but if you are interested in being involved in trials to test the LLDAS you should talk to your doctor.
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Date prepared: September 2016
Summary based on research article published on: 12 October 2015
From: Franklyn, K. et al. Definition and initial validation of a Lupus Low Disease Activity State (LLDAS). Ann Rheum Dis 2016;75:1615–21.
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