Patient Survey of the Physical, Emotional, and Informational Challenges for Patients Living with Neuroendocrine Tumors.

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 ≤ 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 require psychological support/coping strategies, and they seek reliable, personally relevant, easily understood information, including that from interactions with other patients. Plain language summary available for this article.