Engagement and Depression in Adolescents and Young Adults with Childhood-onset Lupus

ABSTRACT Dr. Tamar Rubinstein is an Assistant Professor of Pediatrics in the Division of Pediatric Rheumatology at Albert Einstein College of Medicine. Dr. Rubinstein’s career goal is to identify modifiable biopsychosocial targets in high-risk youth with childhood-onset systemic lupus (cSLE) and test interventions that improve their outcomes and mitigate critical health disparities. She holds a MS in Clinical Research Methods and will augment this training through formal coursework and mentorship from a multi-disciplinary team to develop knowledge and skills in behavioral constructs assessment, biostatistics, clinical study design, patient-engaged methods, and research ethics. This will enable her to achieve independent research status with high caliber studies to investigate how clinical, psychological, and socio-ecological factors impact outcomes of youth with cSLE and test novel interventions in high-risk cSLE populations. Research: Critical disparities in cSLE care and outcomes threaten the lives of youth with cSLE who are of color and low-income. Disengagement in care is common in adolescents and young adults (AYA) with cSLE and can lead to disease progression, damage accrual, and death. However, little is known about modifiable factors that influence disengagement. Specific attention to depression is warranted due to its known association with engagement in other chronic diseases, a strong association with other health behaviors in cSLE, and the documented very high comorbidity of depression in cSLE. Low-income and minority youth are disproportionately affected by depression and may be particularly affected by disengagement. The population of focus in this study is AYA with cSLE from The Bronx, New York, which is predominantly of color and low-income. We suggest that anhedonia, a core symptom of depression, is associated with disengagement, and that engagement is a practical target to improve cSLE outcomes. We will pilot an adapted mobile app targeting engagement in SLE care. This work will provide the basis for a R01 to further study biopsychosocial mechanisms of disease progression and interventional targets to improve outcomes in vulnerable cSLE groups. This work will position Dr. Rubinstein to become an independent clinical investigator in patient-centered research in cSLE. Environment: (1) Dr. Rubinstein’s Department Chair and Division Chief enthusiastically support her and ensure that >75% of her time will be protected for research and education during the award. (2) The Einstein Lupus Cohort is an established longitudinal cohort that this project will leverage along with resources from the Psychiatry Research Institute of Montefiore/Einstein. (3) The multi- disciplinary research team includes experts in psychiatry, sociology, biostatistics, and SLE, with expertise in longitudinal, interventional, and patient-engaged methods. (4) The community setting in The Bronx, New York, comprises a low-income population of color with an increased prevalence of cSLE and depression, a high rate of disengagement in care, and poor cSLE outcomes.