Abstract #1001609: COVID-19 Response in the Cushing's Community: A Report from the Membership of the Cushing's Support & Research Foundation (CSRF), a Patient Advocacy Organization

Cushing’s syndrome (CS) is a rare neuroendocrine disease caused by persistent, excessive cortisol secretion. Many patients suffer significant co-morbidities, and most experience delays in diagnosis treatment. During active CS through at least the short-term post-surgical period, are increased risk of infections and, frequently, poorly managed hypertension glucose intolerance / insulin resistance. The COVID-19 pandemic thus presented this patient population with an unprecedented challenge to mitigate. We examined self-reported pandemic-related behaviors who members US-based advocacy organization Support & Research Foundation (CSRF). An online survey analyzing related status, adverse effects quarantine, adaptive measures engaged as result was designed shared CSRF. Of 274 total responses, 91.2% (n=250) indicated that they had not become infected time completion, whereas 8.8% (n=24) caught virus. majority respondents (78.5%, n=215) remission; remaining 21.5% (n=59) experiencing recurrence, diagnosed but yet treated, or still diagnostic phase. About two-thirds (66.4%, n=182) reported making changes their routine immediately within first week hearing about pandemic. Most (89.8%, n=246) have habitually worn mask throughout 2020 into 2021, some cases it has taken experiences alter behaviors. Among COVID, five wearing before getting virus, four those began after Some postponing labs (38.7%, n=106), MRIs other radiology appointments (21.2%, n=58), testing for virus (13.5%, n=37) based solely on concern potential infection severity due history CS. third (34.7%, n=95) also temporary permanent adrenal insufficiency (AI) CS, notable 38.9% (n=37) these shortages regular cortisol-replacement medication pharmacy. Changing dosage and/or cutting pills another response 13.7% (n=13) AI. Quarantine restrictions times extreme difficult manage. Rare such already adapt conditions daily world often doesn’t readily support understand adaptations. results confirm added stress uncertainty adjusting further quarantine burden patients. Social isolation postponement needed tests procedures particular contributed decreased quality life during