Endocrine Abstracts

Background: With the advent of new therapeutic modalities, the overall survival of neuroendocrine tumor (NET) patients has increased. However, the impact of the symptoms, treatments on the quality of life (QoL) of the patients, accessibility to health care, and financial toxicity are underreported in the literature. We have established a prospective NET biobank to capture the burden of the disease on patients’ daily life and the impact on their QoL

Methods: With Institutional Review Board (IRB) approval, a NET biobank was established in April 2019 at Roswell Park Comprehensive Cancer Center. We have collected patient demographics, symptoms, details regarding access to health care, QoL outcomes through previously developed questionnaires. We have also collected patient samples and analyzed treatment outcomes. Data of 144 patients enrolled to date in the biobank is presented here. The analysis was done with SAS.

Results: Out of the 144 patients, 105 were females and 39 were males. The median age at diagnosis was 55.3 (range: 22 to 81). All the patients were from the United States with majority from New York (41%, n= 59). Majority of the patients had private insurance (62.5%, n= 90), followed by medicare (30%, n=43), medicaid (3.5%, n=5) and 3.5% (n=5) patients had no insurance. Only half of the patients were employed (46.5%, n= 67). 57% (n= 82) of our patients reported that their financial stability is affected by the NET and 27% (n= 38) had to quit their job after being diagnosed with NET. 40.3% (n= 58) of patients had annual household income above $ 75, 000 and 7.6% (n= 11) had annual income less than $25,000. 24% (n=34) patients had income between $25,000-75,000). 8% of patients (n=12) reported financial constraints, difficulties in managing the treatment costs with their income. 26% (n= 37) reported that their income is just sufficient to meet their treatment and health care expenditure. 67% (n= 7) had functional NETs with diarrhea 63% (n= 61), followed by flushing 51% (n=49) and sweating 29% (n=28). Most of our patients have an oncologist, but they have to travel a median of 20 miles for the care (range: 1-1100) and 31% of these patients visit their oncologist monthly. Most of them have surgeon, gastroenterologist, endocrine, nutritionist, and social worker support, and they have to travel a median of 20-30 miles to access the care.

Conclusions: NET diagnosis significantly affects the quality of life and financial stability of patients. A national biobank capturing the QoL parameters including social, emotional, financial well-being would help us to identify and rectify the patient needs promptly.

Abstract ID 21469