Disease Burden and Variability in Sarcoidosis

Abstract

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.

Keywords: disease burden; sarcoidosis; variability.

Figure 1.

A conceptual framework of the health care burden of sarcoidosis and the integrated interaction of various components. Arrows with a plus sign indicate that these specific parameters augment the other parameters and outcomes. EG = for example; SFN = small-fiber neuropathy.