Investigating the Role of Care Retention in Lupus Disease Outcomes and Disparities in Young Adult and Pediatric Patients

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Project Summary/Abstract Systemic Lupus Erythematous (SLE) is a life-long systemic autoimmune condition that affects 1.5 million Americans, with 20% affected from childhood. SLE is a leading chronic disease cause of death in young women, particularly in minority women. While patients of minority race and ethnicity and of low socioeconomic status (SES) are three times more likely to develop SLE, they are seven times more likely to develop SLE- related kidney disease and premature mortality. While some differences in SLE may be biologically explained, an international cohort of SLE patients found that SLE damage risk was higher only in African descendants in the US, but not in 10 other developed countries. This, coupled with findings of lower-quality care and fewer healthcare visits in SLE patients of minority race, ethnicity, and low SES, all indicate an important role for SLE care quality. Care retention occurs over time as patients continue to have provider visits and laboratory tests per clinical practice guidelines. Low care retention has been associated with disparities and worse outcomes in HIV. Adolescents and young adults experience unique challenges to care retention: lower engagement with healthcare; difficulties navigating the healthcare system, including transitioning from pediatric to adult providers; on-going psychosocial development; and major life transitions. Thus, lower care retention in adolescents and young adults has been reported in HIV and likely also occurs in those with SLE. However, care retention has not been studied in young patients with SLE, nor has there been an evaluation of the role of care retention gaps in the excess mortality seen in young adults with SLE, particularly in patients of minority race and ethnicity. In alignment with goals in the NIMHD Strategic Plan, the NIAMS Long-Range Plan, and the NIH Lupus Action Plan, the objective of this study is to evaluate care retention and disease outcome disparities in young patients with SLE and to investigate the role of care retention gaps in mediating health disparities and poor clinical outcomes in these patients. Using national Medicare data and the CARRA pediatric SLE patient registry, this study proposes three aims: Aim 1) To compare care retention by age and determine retention predictors in young adults; Aim 2) To examine rates of hospitalization- and nephritis-free survival and evaluate care retention as a mediator of these disease outcomes in young adults and patients of minority race/ethnicity and low SES; Aim 3) To compare care retention and disease complication-free survival and predictors in pediatric and adolescent patients with SLE by age and disparities groups. Completion of this research will direct future interventions by providing the first estimates of care retention in young patients with SLE, quantifying disparities and care gaps, and evaluating care retention as a modifiable risk factor. The proposed research will also support MD/PhD training to forward the candidate's development as an independent physician scientist studying pediatric autoimmune disease disparities to develop interventions that improve care and reduce disparities.