Improving the Accuracy and Usefulness of the Current Lupus Organ Damage Score Index

Assessing chronic organ damage in people with lupus is one of the key ways both clinicians and researchers evaluate individuals’ health and the severity of the disease. While the current tool used to measure chronic damage, known as the SLICC-ACR Damage Index (SDI), has been widely validated and commonly used for the past 25 years, lupus science and medicine has rapidly evolved in that time. And, with widespread use, some of the tool’s limitations have become apparent.

It’s time to reevaluate and refine the SDI. That’s why the Systemic Lupus International Collaborating Clinics (SLICC), the Lupus Foundation of America (LFA) and the American College of Rheumatology (ACR) have joined forces to address this challenge. The index may benefit from updates in several areas:

• Widening the assessment’s scope – The current SDI only looks at organ involvement that occurs after diagnosis. However, given lupus diagnosis can be delayed by several years, including organ damage prior to official diagnosis may be warranted. And, the current index only includes organ involvement present for at least six months, even though some chronic damage can reverse in that time period.
• Ensuring the index works well for children – Today, expert consensus states the SDI does not adequately capture damage severity in children with lupus. The unique presentation of the disease in children must be further taken into account, such as growth failure and delayed puberty.
• Redefining diagnostic criteria – Given more modern technology is more widely accessible across healthcare settings than ever before, and the scientific community’s understanding of disease continues to grow more complex, more nuanced definitions may be needed.
• Rethinking the scoring system – Adding additional items to the scorecard and potentially weighting certain items as more significant than others may further improve the index’s effectiveness.

“It is exciting to see the first partnership between SLICC, LFA and the ACR focused on revising the original SLICC-ACR damage index to not only widen the scope and update the definitions of damage in lupus but to ensure that the index addresses the unique challenges facing children with lupus,” said Susan M. Manzi, MD, MPH, Chair of Systemic Lupus International Collaborating Clinics (SLICC), Lupus Foundation of America Board Chair and Medical Director, and Chair, Allegheny Health Network Medicine Institute and Director, Lupus Center of Excellence.

This SDI is a critically important tool for lupus care and clinical trials. Many studies have shown that damage predicts further disease and mortality. Increased damage is also associated with increased economic costs and reduced health-related quality of life. The LFA is proud to support this important endeavor to ensure lupus treatment and research continues to evolve with the science.

Learn more about how the LFA is advancing lupus research.

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