Sociodemographic Disparities in Lupus Nephritis: Healthcare Access and Outcomes

描述（由申请人提供）：获得高质量的医疗保健是美国少数民族和弱势群体面临的挑战，系统性红斑狼疮（狼疮）是一种复杂的自身免疫性疾病，可导致肾炎，严重时可导致终末期肾脏疾病。狼疮性肾炎是一种可能可以预防的后果，它严重影响弱势群体：妇女、种族和少数民族、穷人、缺乏医疗保险和教育的人、儿童和老年人。我们发现狼疮终末期肾脏疾病的发病率在1995-2004年间在美国急剧上升，特别是在20-39岁的人群、女性和少数民族人群中。现在黑人中出现的新病例比白人多。造成这些日益扩大的差距的原因尚不清楚。我们假设，对于弱势患者来说，狼疮肾炎的高质量医疗保健存在多重障碍，这是导致过早、过量和可避免的发病率和死亡率的原因。我们的目标是确定和优先考虑潜在的可补救障碍，以获得狼疮肾炎和终末期肾脏疾病，导致未来的研究和政策干预。我们独特的跨学科研究团队将解决全国范围内狼疮肾炎保健的社会人口统计学差异和导致结果差异的潜在可改变因素。我们将组成两个全国性队列：一个是2000年至2004年期间5000名狼疮肾炎患者，另一个是1995年至2009年期间14000名狼疮终末期肾病患者，并调查导致护理可及性和差异的因素。我们开发了一个概念模型来理解狼疮性肾炎健康差异的决定因素，并假设潜在的可改变因素，如专科护理、提供者和医疗中心的数量、医疗保险和治疗依从性，有助于狼疮性肾炎的长期预后，包括发展为终末期肾脏疾病和死亡。来自受影响社区的狼疮患者可能会对我们的发现有很大的了解，并且应该参与制定克服观察到的障碍的策略。我们将对社区狼疮患者进行焦点小组调查，并从患者的角度调查狼疮肾炎和终末期肾脏疾病获得高质量医疗保健的障碍。多学科研究团队将由具有医疗差异研究、生物统计学、药物流行病学、行政索赔数据、狼疮流行病学和定量研究方法等专业知识的研究人员组成。研究结果将广泛传播给狼疮社区、医生和卫生保健工作者。研究结果将为临床医生和政策制定者提供指导，以减少障碍，改善所有美国狼疮性肾炎患者获得护理的机会和结果。公共卫生相关性：狼疮是一种自身免疫性疾病，主要影响美国的弱势群体，常导致肾衰竭。一些群体遭受更糟糕结果的原因尚不清楚。我们将调查如何在医疗保健获取的差异与狼疮肾病的结果“差距”相关。

DESCRIPTION (provided by applicant): Access to quality healthcare is a challenge for minority and disadvantaged groups in the U.S. Systemic lupus erythematosus (lupus), a complex autoimmune disease, can cause nephritis and, in severe cases, end-stage renal disease. Lupus nephritis is a potentially preventable outcome that disproportionately afflicts vulnerable groups: women, racial and ethnic minorities, the poor, those lacking medical insurance and education, and children and the elderly. We have found that the incidence of lupus end- stage renal disease rose dramatically from 1995-2004 in the U.S., in particular among those 20-39 years old, women, and racial and ethnic minorities. More new cases now occur among Blacks than whites. The causes of these growing disparities are unknown. We hypothesize that multiple barriers to quality healthcare for lupus nephritis exist for disadvantaged patients and are responsible for premature, excess, and avoidable morbidity and mortality. Our goals are to identify and prioritize potentially remediable barriers to healthcare access for lupus nephritis and end-stage renal disease, leading to both future research and policy interventions. Our uniquely qualified interdisciplinary research team will address nationwide socio-demographic variation in lupus nephritis healthcare and the potentially modifiable factors responsible for outcome disparities. We will constitute two nationwide cohorts: one with > 5000 patients with incident lupus nephritis from 2000-2004, and a second with >14,000 patients with incident lupus end-stage renal disease from 1995-2009 and investigate the factors that contribute to access to care and disparities. We have developed a conceptual model for understanding the determinants of health disparities in lupus nephritis and posit that potentially modifiable factors, such as subspecialist care, provider and medical center volume, medical insurance, and adherence to therapy, contribute to long-term outcomes in lupus nephritis, including the development of end-stage renal disease and death. Lupus patients from the affected communities will likely have great insight into our findings and should be involved in the development of strategies for overcoming observed barriers. We will perform focus groups of community lupus patients and investigate the barriers to quality healthcare for lupus nephritis and end-stage renal disease from patients' perspectives. The multidisciplinary research team will be composed of investigators with expertise in healthcare disparities research, biostatistics, pharmaco-epidemiology, administrative claims data, lupus epidemiology and quantitative research methodologies. The findings will be widely disseminated to the lupus community, physicians and healthcare workers. The results will provide guidance to clinicians and policy makers on strategies to reduce barriers and improve access to care and outcomes for all Americans with lupus nephritis. PUBLIC HEALTH RELEVANCE: Lupus is an autoimmune disease that mainly afflicts disadvantaged groups in the U.S., often causing kidney failure. The reasons why some groups suffer worse outcomes are not known. We will investigate how differences in healthcare access are related to "gaps" in outcomes for lupus kidney disease.