1 Division of Pulmonary and Critical Care Medicine, Department of Medicine, University of Iowa, Iowa City, Iowa.
2 Division of Pulmonary and Critical Care Medicine, Department of Medicine, Albany Medical College, Albany, New York.
Ann Am Thorac Soc. 2017 Dec;14(Supplement_6):S421-S428. doi: 10.1513/AnnalsATS.201707-564OT.
Sarcoidosis is a systemic inflammatory disease with substantial morbidity and increasing mortality. As part of the National Heart, Lung, and Blood Institute's workshop to better understand this disease and improve the outcomes of patients with sarcoidosis, we reviewed the available data on health care burden and outcomes of this disease in the United States. Disparities in outcomes exist by race, ethnicity, sex, and socioeconomic groups, with African Americans having disproportionately more severe disease. Mortality rates are highest in African Americans, but may be increasing in white individuals. The health care burden of sarcoidosis is defined not only by its somatic manifestations, but is also greatly impacted by psychosocial, economic, and comorbid conditions associated with this disease. Fatigue, depression, cognitive dysfunction, treatment side effects, and pain syndromes are highly prevalent in this population and contribute to poor outcomes. The direct and indirect economic costs to patients and society are likely also substantial, although not well defined. We recommend leveraging existing and future technology and infrastructure to more accurately define and monitor the overall total sarcoidosis-attributable health care burden and patient outcomes in the United States.
结节病是一种全身性炎症性疾病,发病率高,死亡率不断上升。作为美国国家心肺血液研究所(National Heart, Lung, and Blood Institute)研讨会的一部分,我们旨在更好地了解这种疾病并改善结节病患者的预后,以评估美国结节病患者的疾病负担和预后的相关数据。研究结果表明,不同种族、民族、性别和社会经济群体的预后存在差异,非裔美国人的疾病更为严重。非裔美国人的死亡率最高,但白人的死亡率可能正在上升。结节病的疾病负担不仅取决于其躯体表现,还受到与该疾病相关的心理社会、经济和合并症的极大影响。疲劳、抑郁、认知功能障碍、治疗副作用和疼痛综合征在该人群中普遍存在,导致预后较差。患者和社会的直接和间接经济成本也可能很高,尽管尚未明确界定。我们建议利用现有和未来的技术和基础设施,更准确地定义和监测美国结节病患者的整体疾病负担和预后。