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

患有儿童期狼疮的青少年和年轻人的参与和抑郁

• 批准号: 10591744
• 负责人: Tamar B Rubinstein
• 金额: $ 17.41万
• 依托单位: ALBERT EINSTEIN COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-03-02 至 2028-01-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10591744
• 关键词: Accounting; Address; Adolescent; Adolescent and Young Adult; Adult; Affect; Anhedonia; Anxiety; Attention; Autoimmune Diseases; Award; Behavior; Behavior assessment; Biometry; Black race; Brain; Caliber; Caring; Cause of Death; Cessation of life; Child; Childhood; Chronic; Chronic Disease; Clinical; Clinical Investigator; Clinical Research; Color; Data; Department chair; Depressed mood; Development; Diagnostic; Disease; Disease Progression; Disparity; Disparity population; Distress; Education; Effectiveness; Ensure; Environment; Etiology; Exhibits; Feasibility Studies; Female; Follow-Up Studies; Future; Goals; Health behavior; Healthcare Systems; Heterogeneity; Hispanic; Individual; Individual Differences; Inflammation; Interdisciplinary Study; Intervention; Intervention Studies; Knowledge; Longitudinal cohort; Low Income Population; Low income; Lupus; Managed Care; Measures; Medical Care Team; Medicine; Mental Depression; Mental disorders; Mentors; Mentorship; Methodology; Methods; Minority Groups; Morbidity - disease rate; National Institute of Arthritis, and Musculoskeletal, and Skin Diseases; National Institute of Mental Health; New York; Outcome; Parents; Participant; Patients; Pediatrics; Peripheral; Phenotype; Pilot Projects; Play; Population; Positioning Attribute; Prevalence; Primary Care; Psychiatry; Psychosocial Factor; Reporting; Research; Research Design; Research Domain Criteria; Research Ethics; Research Institute; Research Methodology; Resources; Rheumatology; Scheme; Severities; Sociology; Strategic Planning; Surveys; Symptoms; Systemic Lupus Erythematosus; Testing; Time; Training; Visit; Vulnerable Populations; Work; Youth; acceptability and feasibility; adult of color; behavioral construct; behavioral health intervention; biopsychosocial; career; child depression; cohort; college; community setting; comorbid depression; comorbidity; depressive symptoms; health disparity; high risk; improved; improved outcome; longitudinal analysis; longitudinal design; minority children; minority communities; mobile application; mortality; multidisciplinary; novel; open label; patient engagement; patient oriented; people of color; prevent; professor; psychologic; recruit; response; skill acquisition; skills; social determinants; social disparities; sociodemographics; suicidal; symptom cluster

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.

摘要 Tamar Rubinstein博士是儿科流变学部的儿科助理教授， 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改变的生物心理社会目标 在患有儿童期发作的系统性狼疮（cSLE）的高危青年中， 并减轻严重的健康差距。她拥有临床研究方法硕士学位， 通过正式的课程和多学科团队的指导进行培训，以发展知识， 行为结构评估，生物统计学，临床研究设计，患者参与方法的技能，以及 研究伦理这将使她能够获得独立的研究地位，进行高水平的研究， 研究临床、心理和社会生态因素如何影响青年cSLE患者的结局， 在高危cSLE人群中测试新的干预措施。研究：cSLE护理和结局的关键差异 威胁到有色人种和低收入的cSLE青年的生命。脱离护理是常见的， 患有cSLE的青少年和年轻人（AYA）可能导致疾病进展、损害累积，并且 死亡然而，人们对影响脱离接触的可变因素知之甚少。特别注意 抑郁症是有道理的，因为它与其他慢性疾病的参与，一个强大的 与cSLE中其他健康行为的相关性，以及记录的cSLE中抑郁症的高共病率， cSLE。低收入和少数民族青年受抑郁症的影响不成比例， 受到脱离接触的影响。本研究的重点人群是来自纽约布朗克斯的患有cSLE的AYA， 主要是有色人种和低收入人群我们认为，快感缺乏，抑郁症的核心症状， 与脱离接触相关，并且参与是改善cSLE结果的实际目标。我们将 试行一个适应性的移动的应用程序，目标是参与SLE护理。这项工作将为R 01提供基础， 进一步研究疾病进展的生物心理社会机制和干预目标，以改善 cSLE易感人群的结局。这项工作将使鲁宾斯坦博士成为一名独立的临床医生。 以患者为中心的cSLE研究的研究者。环境：（1）鲁宾斯坦博士的系主任和 处长热情地支持她，并确保她75%以上的时间将被保护用于研究和 颁奖期间的教育。(2)爱因斯坦狼疮队列是一个既定的纵向队列， 将利用沿着的资源，从精神病学研究所蒙蒂菲奥里/爱因斯坦。(3)多- 学科研究团队包括精神病学、社会学、生物统计学和SLE方面的专家， 纵向、介入和患者参与的方法。(4)位于纽约布朗克斯的社区环境， 包括有色人种的低收入人群，cSLE和抑郁症的患病率增加， 脱离护理和cSLE预后差。