Patient-reported experience of diagnosis, management, and burden of neuroendocrine tumors: Results from a large patient survey in the United States

Edward M. Wolin, John Leyden, Grace Goldstein, Teodora Kolarova, Ron Hollander, Richard R.P. Warner

Research output: Contribution to journalArticle

9 Scopus citations


Objectives: 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. Methods: 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. Results: 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 hada 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. Conclusions: 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.

Original languageEnglish (US)
Pages (from-to)639-647
Number of pages9
Issue number5
StatePublished - Jan 1 2017



  • Burden of illness
  • Neuroendocrine tumors
  • Patient-centered care
  • Quality of life
  • Rare diseases
  • Surveys

ASJC Scopus subject areas

  • Internal Medicine
  • Endocrinology, Diabetes and Metabolism
  • Hepatology
  • Endocrinology

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