Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals

Int J Cancer. 2020 Mar 1;146(5):1316-1323. doi: 10.1002/ijc.32678. Epub 2019 Oct 25.


Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33-37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 patients/families, 35 advocates and 70 HCPs. Perceived unmet needs regarding provision of information at diagnosis differed between groups. While 59% of HCPs believed they provided sufficient information, informational needs were mostly/fully met for only 30% of patients and 18% of advocates. Additionally, 91% of patients and 97% of advocates felt that patients had to search for information themselves. Availability of Gallium-68-Dotatate PET/CT scan was limited for the majority of patients (patients: 73%; advocates: 85%; HCP: 86%), as was access to treatments, particularly peptide receptor radionuclide therapy (patients: 42%; advocates: 95%; HCPs: 77%). All groups felt that standards of care, including psychological needs and diagnosis of mental health, were not fully met. Although about two-thirds of patients were managed by a multidisciplinary team, 14% of patients reportedly did not have enough contact. All groups supported more patient involvement in research; patients and advocates prioritized improvement in diagnosis and HCPs focused on clinical trials. This survey revealed significant unmet needs but differing perceptions regarding these among the groups. There is a need for investigation and collaboration to improve standards of care for NET patients.

Keywords: neuroendocrine tumor; perspective; standards of care; survey; unmet needs.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Global Burden of Disease
  • Global Health*
  • Health Communication
  • Health Personnel / statistics & numerical data
  • Health Services Needs and Demand / statistics & numerical data*
  • Humans
  • Incidence
  • Information Seeking Behavior
  • Medical Oncology / organization & administration
  • Medical Oncology / statistics & numerical data
  • Middle Aged
  • Neuroendocrine Tumors / diagnosis
  • Neuroendocrine Tumors / epidemiology
  • Neuroendocrine Tumors / therapy*
  • Neuroendocrinology / organization & administration
  • Neuroendocrinology / statistics & numerical data
  • Patient Advocacy / statistics & numerical data
  • Patient Participation / statistics & numerical data*
  • Prevalence
  • Professional Practice Gaps / statistics & numerical data*
  • Professional-Patient Relations
  • Surveys and Questionnaires / statistics & numerical data
  • Young Adult