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.

The results yielded ten major themes with four expressed by both groups: knowledge deficits about cSLE, symptoms limiting daily function (mood and learning), barriers and facilitators of adherence, and worry about the future. AYA-specific themes that surfaced, included symptoms limiting daily function (pain and fatigue), self-care and management, impact on personal relationships and health care provider communication/relationship.

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