Study of Childhood Onset Lupus Confirms Unique Needs of Adolescents and Young Adults
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. Caregiver-specific themes captured, included a need for school advocacy, disruption of the family schedule and sense of normalcy for their adolescent. The researchers concluded that continued psychosocial support, health information education, adherence interventions and personalized treatment plans are necessary to increase self-management and autonomy in AYAs with cSLE. Learn about childhood lupus.