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

6 Citations (Scopus)

Abstract

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
JournalPancreas
Volume46
Issue number5
DOIs
StatePublished - 2017

Fingerprint

Neuroendocrine Tumors
Disease Management
Surveys and Questionnaires
Tumor Burden
Therapeutics
Education

Keywords

  • 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

Cite this

Patient-reported experience of diagnosis, management, and burden of neuroendocrine tumors : Results from a large patient survey in the United States. / Wolin, Edward M.; Leyden, John; Goldstein, Grace; Kolarova, Teodora; Hollander, Ron; Warner, Richard R.P.

In: Pancreas, Vol. 46, No. 5, 2017, p. 639-647.

Research output: Contribution to journalArticle

Wolin, Edward M. ; Leyden, John ; Goldstein, Grace ; Kolarova, Teodora ; Hollander, Ron ; Warner, Richard R.P. / Patient-reported experience of diagnosis, management, and burden of neuroendocrine tumors : Results from a large patient survey in the United States. In: Pancreas. 2017 ; Vol. 46, No. 5. pp. 639-647.
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