Update in Childhood-Onset Lupus: Definition Established with New Tool
Lupus disease complexity and variability makes measuring improvement and response to therapy challenging. Measuring improvement and response to therapy is essential for clinical trials because new therapies need to show they are safe and efficacious. Defining and categorizing clinically relevant improvement and then developing a way to measure this is very challenging. In children, lupus tends to be more aggressive and severe than in adults. The symptoms are more intense, and the disease can have long-term effects on a child’s growth, quality of life and even how long they live.
Until now, a generally accepted tool to measure the various degrees of improvement in childhood-onset systemic lupus erythematosus (cSLE) has not existed. Furthermore, consensus around what defines clinically relevant improvement (CRIcSLE) in children with cSLE had not been reached. In a new study, researchers defined CRIcSLE and, subsequently, developed a tool to categorize clinically important improvement in cSLE. The tool, known as the Childhood Lupus Improvement Index (CHILI), categorizes the level of clinical improvement – minor, moderate, or major – in cSLE.
The CHILI has been initially validated and requires further testing. However, it’s development and consensus of a definition for CRIcSLE in children and adolescents with cSLE is positive. Continue to follow the Lupus Foundation of America for updates on treatment of cSLE, and learn about the Lupus Foundation of America’s childhood lupus research program.