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, reflecting 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.
Health care disparities among persons with SLE have long been noted, but relatively little progress in reducing such disparities has been made. The proposed project analyzes the role that three aspects of health care, access to timely and appropriate providers, technical quality of care, and interpersonal processes of care play in giving rise to differences in outcome by race/ethnicity and socioeconomic status and may help in the design of policies to reduce such differences.
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