Patient-Reported Experience of Diagnosis, Management, and Burden of Neuroendocrine Tumors: Results From a Large Patient Survey in the United States.
The aim of this survey was to examine the experience of patients with neuroendocrine tumors (NETs) to raise awareness of the NET-related burden and identify unmet needs. Here, we report data from patients in the United States.



Patients with NETs participated in a 25-minute anonymous survey, conducted primarily online from February to May 2014. Survey questions captured information on sociodemographics, clinical characteristics, NET diagnostic experience, disease impact/management, interaction with medical teams, and NETs knowledge/awareness.



Of 1928 patients who participated globally, the largest percentage was from the United States (39%). Approximately 50% of US patients reported being diagnosed with other conditions before receiving their NET diagnosis, which for 34% took 5 years or more. Patients experienced many symptoms on a daily basis as a result of NETs, which had a substantial negative impact on their work and daily lives. Numerous improvements were suggested by patients, including better access to NET-specific treatments and medical teams/centers and better education for the management of disease-related and treatment-related symptoms.



This survey demonstrated the significant burden of NETs on patients' lives and identified key areas for improvement in diagnosis and long-term management, including better access to NET-specific treatments and specialist medical teams/centers.
From the *Neuroendocrine Program, Montefiore M-E Center for Cancer Care, Bronx, NY; †The Unicorn Foundation, Mosman, New South Wales, Australia; ‡The Carcinoid Cancer Foundation, Inc., White Plains, NY; §APOZ & Friends, Sofia, Bulgaria; ∥Neuroendocrine Tumor (NET) Research Foundation, Boston, MA; and ¶Mount Sinai School of Medicine, New York, NY.
Edward M
EM
Wolin
John
J
Leyden
Grace
G
Goldstein
Teodora
T
Kolarova
Ron
R
Hollander
Richard R P
RRP
Warner
D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D018358:Neuroendocrine Tumors / Q000175:diagnosis* / Q000473:pathology / Q000628:therapy*; D057566:Self Report; D011795:Surveys and Questionnaires; D047368:Tumor Burden; D014481:United States