Health care factors affecting outcomes of vulnerable populations with SLE

研究者和其他人之前的工作表明，不同种族/民族和社会经济地位的SLE患者接受的医疗保健和结局存在显著差异。拟议的项目评估了三组变量的中介影响，这三组变量共同构成“保健经验”。 这些措施包括获得适当的服务提供者和在适当的服务提供者之间进行协调; 获得访问;以及人际护理过程，反映人与人之间的明确沟通 与SLE和提供者，共同决策，以及支持，尊重， 文化上合适。 该项目将在健康理论模型的背景下测试这三组变量的效果 护理结果。模型中包含的其他主要变量包括SLE状态，通过 疾病活动和损害，卫生保健系统的结构特征，如是否得到护理， 在管理式护理或收费服务或公共与私人保险，以及环境的性质， 包括邻近地区的贫困程度和是否有 卫生保健提供者和设施。 该研究将使用狼疮结局研究（LOS）来测试模型。LOS参与者在以下方面各不相同： 种族/民族、社会经济地位、SLE的持续时间和严重程度、地理来源，以及 招募来源，超过三分之二的样本来自临床环境之外。LOS将包括 大约737名SLE患者在研究开始时和5年的随访中， 大约3,300人-年的观测数据可供分析。 该研究的具体目的是描述不同种族/民族和SES在医疗保健方面的差异 的经验，评估的作用，结构特点的卫生保健系统在这种卫生保健 经验，并评估医疗保健经验在结果中的作用。该项目应该可以帮助临床医生 和决策者更好地了解医疗保健如何导致SLE的不良后果， 少数民族和社会经济地位较低的人。

Prior work by the investigators and others has shown that there are substantial differences in the health care received and in outcomes of SLE by race/ethnicity and socioeconomic status. The proposed project assesses the mediating impact of three sets of variables which together constitute "health care experiences". These include access to and coordination among appropriate providers; technical quality of care once access is obtained; and interpersonal processes of care, refiecting clear communication between persons with SLE and providers, shared decision-making, and an interpersonal style that is supportive, respectful, and culturally appropriate. The project will test the effect of these three sets of variables in the context of a theoretical model of health care outcomes. The other major variables incorporated in the model include SLE status as measured by disease activity and damage, structural features of the health care system such as whether care is received in managed care or fee-for-service or in public vs. private insurance, and the nature of the environment, including such characteristics as the extent of poverty in the immediate neighborhood and the availability of health care providers and facilities. The study will use the Lupus Outcomes Study (LOS) to test the model. The LOS participants are diverse in terms of their race/ethnicity, socioeconomic status, duration and severity of SLE, geographic origin, and recruitment source, with over two-thirds sampled outside of clinical environments. The LOS will include about 737 persons with SLE at the outset of the study and over the five-years of follow-up, there will be about 3,300 person-years of observation available for analysis. The specific aims of the study are to describe differences by race/ethnicity and SES in health care experiences, evaluate the role of structural features of the health care system in such health care experiences, and assess the role of health care experiences in outcomes. The project should help clinicians and policymakers better understand how health care results in adverse outcomes of SLE for members of racial and ethnic minorities and those of lower socioeconomic status.