Childhood-onset systemic lupus erythematosus (cSLE) accounts for 10-20 percent of all people living with lupus. Understanding the living experience of adolescents and young adults (AYAs) with cSLE is an important first step in developing interventions to aid in self-management and adherence.

A new study surveyed AYAs from a Midwestern children’s hospital with cSLE between the ages of 12 and 24, and 44 primary caregivers, about living with lupus.