Rare Disease Report

Neuroendocrine Tumors: A Patient Survey

OCTOBER 20, 2017
James Radke
At the 10th North American Neuroendocrine Tumor Society (NANETS) Annual Symposium in Philadelphia, Mohid Khan and colleagues presented the results of a survey conducted in the United States, Germany and France involving 741 patients with neuroendocrine tumors.

Neuroendocrine tumors are a rare type of cancer that originate in neuroendocrine cells throughout the body, often originating in the gastrointestinal tract, lungs or pancreas. Symptoms can vary greatly among these patients but gastrointestinal problems are a fairly common complaint.

The survey consisted of 12 multiple-choice questions to determine the physical, emotional, and informational challenges these patients face. The 741 surveys submitted included responses from 428 patients in the United States, 240 in Germany, and 73 in France. Feedback noted that anxiety was the most prominent emotion following their diagnosis, with 50-60% of patients reporting that feeling.

Regarding their biggest challenges, patients reported fatigue as their biggest challenge followed by diarrhea, sleep disturbances, and pain.

The survey also asked patients where they received their medical information about neuroendocrine tumors and the results were highly variable.  Internet was the main source of information, including the gathering of material for  neuroendocrine tumor/carcinoid websites and patient association websites. Information was also obtained from patient brochures and booklets.

Interestingly, when asked what format they would like to receive information about neuroendocrine tumors, the preferred format were case studies involving ‘patients like me’. Other favored formats included ‘ask the expert’ and e-mails or e-newsletters.
The authors concluded that there is an unmet need for simple, clear, precise, and focused explanations that patient can access in order to answer their physical or emotional problems.

Khan M, Majdi A, Goldstein G, Mellar K, Watts R. International patient survey of physical, emotional and informational challenges when living with NETs: understanding the unmet need. Presented at the 10th NANETS Annual Meeting; Philadelphia PA; October 20 – 22, 2017.

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