A framework for testing different definitions of remission against long-term outcomes

INTRODUCTION

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.

WHAT DID THE AUTHORS HOPE TO FIND?

Remission is a simple idea, but there are many different ways of defining it. This can be important if remission is used as a measure in clinical trials, or if it is a target for a person’s treatment. The aim of this project was to achieve international consensus on the best way to define remission in lupus.

HOW WAS THE STUDY CONDUCTED?

A large group of specialist doctors and people with lupus were invited to define what they thought were the specific issues in defining remission. The authors then performed literature searches to see what supporting information there was. This information was then presented to the whole group, who debated and discussed the issues and came up with a set of statements.

WHAT WERE THE MAIN FINDINGS?

Most people in the group agreed on the main ingredients of possible definitions of remission in lupus. Overall, the group came up with three principles to guide the development of remission definitions.
The first states that remission is a durable state. Secondly, remission should be defined using a validated index or tool for measuring disease activity. The third principle is that there should be a distinction between remission without the need for medication, and remission ‘on therapy’.
As well as these three principles, the group developed eight preliminary statements.
► Remission is a desirable outcome for a person with lupus
► At the very least, remission in lupus means the absence of symptoms and signs of the disease
► Remission is not the same as a cure
► Remission is not the same as low disease activity
► Sustained remission is associated with a low likelihood of adverse outcome
► ‘Serological activity’ in lupus generally refers to the presence of anti-DNA antibodies or other markers of the disease in the blood
► Treatment with antimalarial medicine does not mean someone cannot be defined as being in remission
► Treatment with moderate- or high-dose steroid medicine does not mean someone cannot be defined as
being in remission

ARE THESE FINDINGS NEW?

Yes, as far as we know this is the first large international effort to define remission in lupus.
ARE THERE ANY LIMITATIONS?

The issues were not fully resolved. This is why the authors describe this as a framework for defining remission, rather than the final word on the topic. However, the proposed definitions can be used, and should be tested further.

WHAT DO THE AUTHORS PLAN ON DOING WITH THIS INFORMATION?

The proposed definitions are being tested in many different groups of people (with SLE).

WHAT DOES THIS MEAN FOR ME?

If you have lupus, this framework may benefit you indirectly. By having a clear and widely accepted definition of what remission really is, it will be possible to do better studies of new treatments, which might mean there will be more options in the future.

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Date prepared: March 2017

Summary based on research article published on: 24 November 2016

From: van Vollenhoven, R. et al. A framework for remission in SLE: consensus findings from a large international task force on definitions of remission in SLE (DORIS). Ann Rheum Dis 2017;76:554–561. doi:10.1136/annrheumdis-2016-209519.
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