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

摘要 塔玛尔·鲁宾斯坦博士是儿科风湿科儿科助理教授 阿尔伯特·爱因斯坦医学院。鲁宾斯坦博士的职业目标是确定可修改的生物心理社会靶标 儿童期系统性红斑狼疮(CSLE)的高危青少年和改善其预后的测试干预 并缓解严重的健康差距。她拥有临床研究方法硕士学位，并将继续攻读这一学位 通过正式的课程作业和多学科团队的指导进行培训，以发展知识和 具备行为结构评估、生物统计学、临床研究设计、患者参与方法和 研究伦理。这将使她能够以高水平的研究获得独立的研究地位 调查临床、心理和社会生态因素如何影响患有CSLE和 在CSLE高危人群中测试新的干预措施。研究：CSLE护理和结果的严重差距 威胁患有CSLE的有色人种和低收入青年的生命。脱离护理在以下方面很常见 患有CSLE的青少年和青壮年(Aya)，可导致疾病进展、损害累积和 死亡。然而，人们对影响脱离的可改变因素知之甚少。特别注意 抑郁症是有根据的，因为它与其他慢性疾病有关，一种强烈的 与CSLE的其他健康行为的关联，以及记录的抑郁症的极高共患率 CSLE。低收入和少数族裔青年受抑郁症的影响不成比例，可能特别 受脱离的影响。这项研究的重点人群是来自纽约布朗克斯区的患有CSLE的Aya， 主要是有色人种和低收入者。我们认为，快感缺乏，抑郁症的核心症状，是 这与脱离接触有关，而这种接触是改善CSLE结果的实际目标。我们会 试用一款经过调整的移动应用程序，目标是参与SLE护理。这项工作将为R01提供基础 进一步研究疾病进展的生物心理社会机制和改善干预目标 易受伤害的CSLE群体的结果。这项工作将使鲁宾斯坦博士成为一名独立的临床医生 CSLE以患者为中心研究的调查员。环境：(1)鲁宾斯坦博士的系主任和 科长热情支持她，并确保她75%的时间将受到保护，用于研究和 在颁奖期间进行教育。(2)爱因斯坦狼疮队列是本项目的既定纵向队列 将与蒙特菲奥里/爱因斯坦精神病学研究所的资源一起利用。(3)多方面的- 学科研究团队包括精神病学、社会学、生物统计学和系统性红斑狼疮方面的专家，具有以下专业知识 纵向的、介入的和患者参与的方法。(4)纽约布朗克斯区的社区环境， 包括低收入有色人种人群，CSLE和抑郁症的患病率增加，比率很高 脱离护理和不良的CSLE结果。

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.