SOCIAL/CLINICAL CHARACTERISTICS OF SARCOIDOSIS PATIENTS

结节病是一种慢性炎性肉芽肿性疾病， 这在年轻人中更为普遍，尤其是女性， 在黑人身上发生得更频繁，也许更严重。黑人 可能社会经济地位较低，没有保险或保险不足， 使用更少的医疗服务，更有可能接受医疗补助， 其他形式的公共援助，所有这些都可能影响医疗 服务使用和结节病护理的结果。目前结节病 正在为大都会华盛顿，华盛顿特区开发登记处，面积、 包括从结节病患者临床记录中提取的数据 来自华盛顿两所相关的大学医院。这个项目的目的是 是增强该注册表以允许进一步标准化描述 现有的和新的结节病患者和检测推定的 种族、社会经济地位、依从性、疾病之间关系的假设 严重程度、保险状况和医疗服务使用情况。 我们建议扩展、维护和分析登记数据， 一个结节病患者队列， 一个单一的大学医疗中心的二级服务，位于 华盛顿，华盛顿特区，黑人人口众多的地区注册表数据 将包括患者的标准化病历摘要， 自1992年7月1日以来。抽象数据包括：社会人口学状况; 经济和就业状况;家族结节病史;存在 其他疾病;当前症状;实验室和X光检查;药物治疗 使用;以及吸烟和非法药物使用。此外，电话调查 将用于获得所有其他标准化信息， 登记患者。调查内容将包括报告的疾病 症状;生活质量（QOL）;医疗护理使用和依从性; 保险、公共援助和福利状况;收入;以及 社会功能我们将分析估计的200例患者登记 使用摘要和调查患者按种族和社会经济地位列出的病例 描述符，并测试关于种族关系的假定假设 和社会经济地位与疾病状态的关系 生活质量，身体和社会功能，医疗保健使用， 遵守护理，以及医疗保险和福利。

Sarcoidosis is a chronic inflammatory granulomatous disease of unknown cause which is more prevalent among young adults, particularly women, and occurs more frequently, and perhaps more severely, in Blacks. Blacks are likely to be of lower socioeconomic status, uninsured or underinsured, to use less health services, and more likely to receive Medicaid and other forms of Public Assistance, all of which could affect medical service use and outcomes of care for sarcoidosis. Currently a Sarcoidosis Registry is being developed for the Metropolitan Washington, D.C., Area, consisting of data abstracted from sarcoidosis patients clinic records from two related University hospitals in D.C. The intent of this project is to enhance this registry to permit further standardized description of existing and new sarcoidosis patients and testing of presumptive hypotheses on relationships among race, SES, compliance, disease severity, and insurance status and health services use. We propose to expand, maintain and analyze the registry data to develop a sarcoidosis disease cohort of patients seen in the primary and secondary services of a single University Medical Center located in Washington, D.C., an area with a large Black population. Registry data will consist of standardized medical record abstracts of patients seen since July 1, 1992. Abstract data include: sociodemographic status; economic and employment status; family sarcoidosis history; presence of other diseases; current symptoms; laboratory and x-ray tests; medication use; and smoking and illicit drug use. Additionally, a telephone survey will be used to obtain additional standardized information on all registry patients. The survey content will consist of reported disease symptoms; quality of life (QOL); medical care use and compliance; insurance, public assistance and welfare status; income; and physical and social functioning. We will analyze the estimated 200-patient registry cases by race and socioeconomic status using abstract and survey patient descriptors, and test presumptive hypotheses on the relationship of race and socioeconomic status to disease status at presentation and over time, quality of life, physical and social functioning, medical care use, compliance with care, and medical insurance coverage and welfare.