Leveraging the CARRA Registry to Guide Family-Centered Intervention in cSLE

Project Period:
2026-2029

Grant Category:
MCDA

Disease Area:
Lupus and Related Conditions (SLE/RC)

Children with systemic lupus (cSLE) require complex care, including multiple medications, frequent clinic visits, and ongoing monitoring. Families managing this disease often face additional challenges that make daily care harder. These may include difficulty understanding medical instructions, trouble getting to appointments, limited access to food, language barriers, and financial strain. When these needs are not addressed, they can interfere with treatment and worsen health outcomes. Our preliminary data show that families of children with cSLE report high rates of unmet social needs, especially difficulty reading hospital materials, food insecurity, and transportation barriers. These challenges are more common among Hispanic/Latino families and those with public or no insurance. Such inequities may contribute to gaps in care engagement and long-term disease control. This project will compare families who participate in the CARRA Registry to those who do not, examining differences in social needs and missed visits. We will also conduct one-on-one interviews with adolescents and their caregivers to understand their lived experiences and identify which barriers most affect daily disease management. By combining medical record data with family input, we will generate a prioritized list of needs that matter most to families. Our center cares for a large and diverse population of children with cSLE. Findings from this study will guide the development of a family-centered intervention to improve care engagement and reduce disparities. Ultimately, this work will help ensure that the voices of children and caregivers shape future lupus care and research across the CARRA network.

Investigators

Kristina Ciaglia, MD

The University of Texas Southwestern Medical Center (UT Southwestern)

Related Awarded Grants

Disease Area:
Lupus and Related Conditions (SLE/RC)

CARRA Samples for funded LRA Global Team Science Award