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.

抽象的 塔玛·鲁宾斯坦（Tamar Rubinstein 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目标 在具有童年发作的系统性狼疮（CSLE）和测试干预措施的高风险青年中 并减轻严重的健康差异。她拥有临床研究方法的MS，并将增加此 通过多学科团队的正式课程和指导培训，以发展知识和 行为构造评估，生物统计学，临床研究设计，患者参与方法的技能和 研究伦理。这将使她能够通过高素质研究获得独立的研究状态 调查临床，心理和社会生态因素如何影响CSLE和CSLE和 测试高危CSLE种群中的新干预措施。研究：CSLE护理和结果的关键差异 威胁有色和低收入的CSLE青年的生活。脱离护理很常见 青少年和年轻人（AYA）具有CSLE，可以导致疾病进展，损害准确性和 死亡。但是，关于影响脱离接触的可修改因素知之甚少。具体注意 由于已知与其他慢性疾病的关联，抑郁症是有必要的 与CSLE中的其他健康行为相关 CSLE。低收入和少数民族青年受到抑郁的影响不成比例，尤其是 受脱离接触的影响。这项研究的重点人群是来自纽约布朗克斯的CSLE的AYA， 它主要是颜色和低收入。我们建议Anhedonia是抑郁症的核心症状，是 与脱离接触有关，参与是改善CSLE结果的实用目标。我们将 飞行员针对SLE Care的适应性移动应用程序。这项工作将为R01提供基础 进一步研究疾病进展和介入目标的生物心理社会机制 脆弱的CSLE组的结果。这项工作将使鲁宾斯坦博士成为独立的临床 CSLE中以患者为中心的研究的研究者。环境：（1）鲁宾斯坦博士的部门主席和 部门负责人热情地支持她，并确保她的时间中有75％的时间将受到研究的保护和 奖励期间的教育。 （2）爱因斯坦狼人队列是一个已建立的纵向队列 将利用蒙特菲尔/爱因斯坦精神病学研究所的资源。 （3）多 纪律研究团队包括精神病学，社会学，生物统计学和SLE的专家，具有专业知识 纵向，介入和患者参与方法。 （4）纽约布朗克斯的社区环境 包括低收入的色彩种群，CSLE和抑郁症的患病率增加，率很高 在护理方面的脱离接触和不良的结局。