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.
There are multiple chapters near you. Select your preferred chapter.
Serving the District of Columbia, Maryland, and Northern Virginia.
Serving southern Illinois up to and including Springfield, eastern Kansas, and Missouri
Serving northern and central Illinois
Serving north, central and west Texas, including Dallas/Fort Worth, San Antonio, Austin, El Paso, Lubbock, and surrounding areas
Serving all northern counties in New Jersey, south through Mercer and Ocean counties
Supporting lupus patients and advocates in New York and Connecticut.
Serving Philadelphia and southeastern Pennsylvania, all southern counties in New Jersey up through Burlington county, and Delaware
Serving Houston, Beaumont, Corpus Christi, Harlingen and surrounding areas in Texas
There are multiple walks near you.