Introduction: Patient surveys of disease burden on daily living rarely explore the impact that patient information sources can have on optimizing care. Methods: To identify unmet needs/possible solutions for information and support to address the physical, emotional, and informational challenges that patients living with neuroendocrine tumors (NETs) may have, an online survey was conducted among patients recruited by the Carcinoid Cancer Foundation (US), Netzwerk Neuroendokrine Tumoren (NeT) e.V. (Germany), and Association de Patients porteurs de Tumeurs Endocrines Diverses (France); these organizations approved the survey questions. Results: Between August 2015 and November 2015, 741 online surveys were completed in France (n = 73), Germany (n = 240), and the US (n = 428) during a 6-week period. Over 65% of patients were diagnosed B 5 years ago. Across the three countries, multiple symptoms were experienced before diagnosis. These symptoms were consistent with those of functional tumors, most commonly diarrhea (40-47%) and flushing (12-45%). The most common emotion upon diagnosis was anxiety (20-67%). The greatest physical challenges for patients living with NETs included fatigue (26-66%), diarrhea (22-48%), pain/discomfort (13-40%), and sleep disturbance (16-35%), despite cancer management. Information sources classed as ''very useful'' included patient-association websites, disease awareness websites, and journals; ''patients-like-me'' case studies were most favored (43-67%) for future use as sources of information. Conclusion: Patients with NETs face negative emotions and multiple physical challenges that Katharina Mellar died in August 2018.

299 Background: Surveys of neuroendocrine tumor (NET) burden on daily living rarely explore the impact that patient information sources can have on optimizing care. This subset of a large US survey focused on identifying the unmet needs, and available information sources and support that address the physical, emotional and informational challenges that patients with NETs experience. Methods: The Carcinoid Cancer Foundation is a US, non-profit organization that encourages and supports research and education on carcinoid and related NETs. A Carcinoid Cancer Foundation-approved survey was shared with patients with NETs via the Carcinoid Cancer Foundation website, e-newsletters and social media; some patients were emailed direct links to the online survey. Results: US, online surveys (N=428; 13 questions) were completed over 6 weeks in 2015. Patients had mostly small intestinal (40%), lung (13%) or pancreatic (11%) primary tumors; 66% of patients were diagnosed in the previous 5 years. Patients experienced multiple symptoms, most commonly diarrhea (47%), flushing (45%), changes in bowel/bladder habits (37%) and persistent pain (30%). Common emotions upon diagnosis were fear (58%), anxiety (53%), feeling overwhelmed (50%), confusion (39%) and sadness (34%). Greatest physical challenges were fatigue (66%), diarrhea (48%), pain/discomfort (40%) & sleep disturbance (35%). “Very useful” information sources were (1) NET/carcinoid disease awareness website, (2) carcinoid/NET support group, (3) Google, (4) discussion forums and (5) governmental/health-authority websites. Favored information formats included “patients-like-me” case studies (67%), email (59%), e-newsletters (56%), FAQs (50%), short interactive tutorials (32%) and “top tips” (31%). Information sought, but not found, included simple advice on diet, holistic treatment, complementary therapies, where to find the best treatment, pain management & prognosis. Conclusions: In the US, patients with NETs face negative emotions and multiple physical challenges that require psychological support/coping strategies, and they seek reliable, personally relevant, easily understood information, including that from interaction with other patients.