Evaluating Health Care Quality in Systemic Lupus Erythematosus

描述(申请人提供)：这是一份K23奖的申请书，授予加州大学旧金山分校的风湿病学家吉努斯·亚兹达尼博士，以开发一项评估系统性红斑狼疮(SLE)患者的医疗保健质量的研究计划。尽管长期存活率有显著改善，但系统性红斑狼疮的发病率和死亡率仍然高得令人无法接受。随着时间的推移，许多SLE患者经历了相当大的器官损伤和越来越多的残疾。此外，系统性红斑狼疮中显著的社会人口差异有很好的记录，但了解很少；种族和族裔少数群体以及社会经济地位较低的人患疾病并发症的风险更高，死亡率更高。对于这些人群所接受的医疗保健的质量以及临床护理的差异是否可能部分解释这些不同的结果，人们知之甚少。我研究的首要目标是了解系统性红斑狼疮医疗质量的更广泛的决定因素，并开发和改进在这种情况下衡量医疗质量的方法。在我为系统性红斑狼疮制定和验证第一个质量指标集的工作基础上，该指标明确定义了在这种情况下最低限度可接受的临床护理标准，拟议的研究旨在扩大系统性红斑狼疮患者的方法框架，并创建更全面的方法来监测和改善SLE患者的医疗质量。指导和培训计划围绕质量衡量的几个核心领域展开，包括获得先进生物统计方法、定性方法以及调查设计和验证方面的必要技能。在拟议的研究中，针对系统性红斑狼疮的临床质量测量将首次应用于全国性的管理数据集(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监测SLE医疗质量的可行性，而且还将深入了解质量是否因国家卫生政策和社会人口、社区或提供者特征而异。接下来，将从患者的角度考虑护理质量。我们将使用定性的方法来了解不同种族/民族的SLE患者是如何护理他们的病情的，并概念化高质量的护理(目标2)。在这一定性分析的基础上，我们将开发和测试患者报告的系统性红斑狼疮(SLE)卫生保健质量的衡量标准(目标3)。这些项目产生的工具和方法将有助于系统性评估系统性红斑狼疮的卫生保健质量。这种评估所产生的研究最终可用于创建对SLE患者群体多样化更具反应能力的卫生保健系统，从而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.