Real-world analysis of neuroendocrine tumor misdiagnosis and associated costs

Purpose: Conditions for which neuroendocrine tumor (NET) is commonly misdiagnosed were compared among patients with and without NET, and the associated healthcare costs were described.Methods: Adults with a NET diagnosis were selected retrospectively from the IBM MarketScan claims databases during 1/1/2015-12/31/2018 (earliest = index), comprising the NET cases.Non-NET controls included age/ gender matched patients without any cancer diagnoses.Patients were followed for a five year look back period when conditions for which NET is commonly misdiagnosed (gastrointestinal, respiratory, metabolic [i.e.liver disease], dermatologic) were measured and compared between cases and matched controls using odds ratios.Misdiagnosis-related costs were reported per patient per month (PPPM) from the earliest misdiagnosis to NET diagnosis.Patients with pancreatic adenocarcinoma misdiagnoses and related costs were reported separately.Results: This analysis included 3460 NET cases and 10,370 non-NET controls (mean age 61 years).Compared to non-NET controls, 70 % of NET cases had a diagnosis of a gastrointestinal, respiratory, metabolic, or dermatologic condition, with 2.07 higher odds (95 % CI 1.91-2.25).Median time from earliest potential misdiagnosis to NET was 3.4 years.Overall mean (standard deviation) healthcare costs related to misdiagnoses were $2858 ($6495) PPPM.Costs were highest for gastrointestinal misdiagnoses ($3350 [$7108]).Among NET cases, 69 (2 %) patients had a pancreatic adenocarcinoma misdiagnosis; related PPPM costs were substantial ($29,321 [$62,385]) and driven by outpatient services including treatment administration. Conclusion:The increased odds of common misdiagnosis conditions among NET cases compared with non-NET controls, contributing to unnecessary healthcare costs, supports the need for accurate identification of NET.Synopsis: The majority of patients with NET (70 %) were previously misdiagnosed, occurring a median of 3.4 years before correct diagnosis.Total mean healthcare costs related to misdiagnoses were $2858 PPPM and costs related to pancreatic adenocarcinoma misdiagnoses were substantial ($29,321 PPPM).well-differentiated, some low-grade NETs behave aggressively with local invasion, metastasis, and recurrence after resection. 5he incidence of NETs has been growing globally for the last several decades. [6][7]7][8][9] In the United States (US), the incidence is estimated to have increased from 1.09 to 6.98 per 100,000 between 1973 and 2012. 4Improvements in diagnostic tools (e.g.imaging, endoscopy, etc.), heightened awareness, and standardization of nomenclature, grading, and staging are potential contributing factors for the increase in incidence. 4,10owever, both functioning and nonfunctioning NETs present late with nonspecific symptoms resulting in potential delays in correct