This is an application for a K23 award for Dr. Jinoos Yazdany, a rheumatologist at the University of California, San Francisco, to develop a research program evaluating the quality of health care for individuals with systemic lupus erythematosus (SLE). Despite significant improvements in long-term survival, morbidity and mortality from SLE remain unacceptably high. Many individuals with SLE experience considerable organ damage and increasing disability over time. Moreover, striking sociodemographic disparities in SLE are well- documented but poorly understood; racial and ethnic minorities and those with low socioeconomic status are at increased risk for disease complications and have higher mortality. Little is known about the quality of health care received by these populations and whether differences in clinical care may partially explain these disparate outcomes. The overarching goal of my research is to understand the broader determinants of health care quality in SLE and to develop and refine methods to measure quality in this condition. Building on my work developing and validating the first quality indicator set for SLE, which explicitly defined minimally acceptable standards of clinical care in the condition, the proposed research seeks to expand the methodological framework for and create a more comprehensive approach to monitoring and improving health care quality for individuals with SLE. The mentoring and training program revolves around several areas central to quality measurement, including obtaining necessary skills in advanced biostatistical methods, qualitative methods, and survey design and validation. In the proposed research, clinical quality measures specific to SLE will for the first time be applied to a nationwide administrative dataset (Aim 1). The results of this investigation will not only determine the feasibility of this unobtrusive approach to monitoring health care quality in SLE, but also yield insight into whether quality varies by state health policies and sociodemographic, community or provider characteristics. Next, quality of care will be considered from the patient's perspective. We will use qualitative methods to understand how patients of different racial/ethnic groups with SLE experience care for their condition and conceptualize high quality care (Aim 2). Building on this qualitative analysis, we will develop and test a patient-reported measure of health care quality in SLE (Aim 3). The tools and methods resulting from these projects will facilitate systematic assessment of health care quality in SLE. Research stemming from such assessments can ultimately be used to create health care systems that are more responsive to a diverse population of patients with SLE, paving the way to improve the quality of care and reduce health disparities.
This project will develop methods and tools for measuring and monitoring health care quality in SLE, facilitating future efforts to improve care for those with the condition and to reduce disparities.
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