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A2540 - Impact of sarcoidosis on participants from the Sarcoidosis Advance Registry for Cures (SARC)
Author Block: A. Gerke1, L. Harper2, R. P. Baughman3, M. A. Judson4, L. Serchuck5, L. A. Maier6, M. Drent7, G. Spitzer8, N. Singh9, M. Li2, X. Wang2, D. A. Culver10; 1Pulmonary/Critical Care, University of Iowa, Iowa City, IA, United States, 2Cleveland Clinic, Cleveland, OH, United States, 3Univ of Cincinnati Med Ctr, Cincinnati, OH, United States, 4Div of Pulm/CCM, Albany Medical College, Albany, NY, United States, 5Board of Directors, Foundation for Sarcoidosis Research, Chicago, IL, United States, 6Natl Jewish Health, Denver, CO, United States, 7Maastricht Univ Medical Centre, Maastricht, Netherlands, 8Research, Foundation for Sarcoidosis Research, Chicago, IL, United States, 9Foundation for Sarcoidosis Research, Chicago, IL, United States, 10Cleveland Clinic Foundation, Cleveland, OH, United States.
RATIONALE: The consequences of sarcoidosis are wide-ranging and may have a great impact on patients’ lives. So far, little research has been done to assess the global impact of sarcoidosis from either medical or financial perspectives. METHODS: The Foundation for Sarcoidosis Research - Sarcoidosis Advanced Registry for Cures (FSR-SARC) is a longitudinal web-based registry of patient-reported history, diagnostic information, treatment and outcomes. We included the responses of the first 2773 registry patients. We analyzed results of self-reported description of the disease burden, including duration of disease, reported organ involvement, new comorbidities occurring after the diagnosis, medications used, and financial impact of the disease. RESULTS: More than half (1523, 54.9%) of patients were currently taking anti-sarcoidosis medications, but only 469 (16.9%) were taking a corticosteroid sparing agent. New medical comorbidities were common, with 2037 respondents (73.5%) reporting a new medical condition following the diagnosis of sarcoidosis. Most common comorbidities were depression (717 patients, 25.9%), chronic fatigue (587 patients, 21.2%), and obesity (567 patients, 20.4%). In univariate analysis, new diabetes mellitus (13.4% vs. 9%, p=0.0003), osteopenia (14.1% vs. 9.9%, p=0.0007), and heart failure (5.0% vs. 2.6%, p=0.0009) were strongly associated with corticosteroid use. Finally, those without any new comorbidities were less likely to have been treated with corticosteroids (24.3% vs. 28.1%, p=0.03). At least one hospitalization occurred in 859 patients (27.5%) in the year prior to completing the survey. However, 73 patients (2.8%) accounted for 33% of the 1488 reported hospitalizations. The majority of patients (92.8%) reported having some type of health insurance. Despite this, the financial impact of the disease was high, with 836 respondents (30.5%) having to quit their job, and 1228 respondents (44.7%) reporting substantial financial impact to their family due to sarcoidosis. CONCLUSIONS: Sarcoidosis leads to substantial medical comorbidities, as well as financial burden. Those using corticosteroids are at risk to develop diabetes, osteopenia, or heart failure. The financial burden of sarcoidosis is also substantial in this cohort. A significant proportion of patients lost employment or experienced financial strain which occurred despite greater than 90% of patients having medical insurance.