International Patient Survey of Physical, Emotional and Informational Challenges when Living with NETs: Understanding the Unmet Needs

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Introduction: The usefulness of information sources used by NET patients is rarely explored by patient surveys of disease burden/impact on daily living, and may be key to optimizing care.

Aim(s): Identify unmet needs/possible solutions for information/support to address NET patients’ physical, emotional and informational challenges.

Materials and methods: The Carcinoid Cancer Foundation (CCF), Netzwerk Neuroendokrine Tumoren (NeT) e.V. and Association de Patients porteurs de Tumeurs Endocrines Diverses (APTED) approved questions; patients registered with the respective websites were emailed links.

Conference: 14th Annual ENETSConcerence (2017)

Presenting Author: Khan M

Authors: Khan M, Majdi A, Goldstein G, Mellar K, Watts R,

Keywords: net, patients, survey, symptoms, unmet needs,