Evaluating Health Care Quality in Systemic Lupus Erythematosus

描述（由申请人提供）：这是一份K23奖的申请书，申请人是加州大学弗朗西斯科分校的风湿病学家Jinoos Yazdany博士，他将开发一项研究计划，评估系统性红斑狼疮（SLE）患者的医疗保健质量。尽管SLE的长期生存率显著提高，但其发病率和死亡率仍然高得令人无法接受。许多SLE患者经历了相当大的器官损伤，并随着时间的推移而增加残疾。此外，SLE中显著的社会人口学差异有充分的文献记载，但了解甚少;少数民族和社会经济地位低的人患疾病并发症的风险增加，死亡率较高。关于这些人群所接受的医疗保健质量以及临床护理的差异是否可以部分解释这些不同的结果，我们知之甚少。我的研究的总体目标是了解SLE医疗质量的更广泛的决定因素，并开发和完善在这种情况下测量质量的方法。基于我开发和验证SLE的第一个质量指标集的工作，该指标明确定义了该条件下临床护理的最低可接受标准，拟议的研究旨在扩展方法框架，并创建一种更全面的方法来监测和改善SLE患者的医疗保健质量。指导和培训计划围绕质量测量的几个核心领域，包括获得先进的生物统计方法，定性方法以及调查设计和验证的必要技能。在拟议的研究中，SLE的临床质量指标将首次应用于全国范围的管理数据集（目标1）。这项调查的结果不仅将确定这种不引人注目的方法来监测SLE的医疗保健质量的可行性，而且还将深入了解质量是否因国家卫生政策和社会人口统计学，社区或提供者的特征而异。接下来，将从患者的角度考虑护理质量。我们将使用定性方法来了解不同种族/民族的SLE患者如何体验他们的病情护理，并将高质量护理概念化（目标2）。在此定性分析的基础上，我们将开发和测试SLE患者报告的医疗保健质量指标（目标3）。从这些项目中产生的工具和方法将有助于系统性红斑狼疮的医疗保健质量的系统评估。来自此类评估的研究最终可用于创建对不同SLE患者人群更敏感的医疗保健系统，为提高护理质量和减少健康差距铺平道路。

DESCRIPTION (provided by applicant): 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.