Journal article

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

Simone Leyden, Teodora Kolarova, Catherine Bouvier, Martyn Caplin, Siobhan Conroy, Phillipa Davies, Sugandha Dureja, Massimo Falconi, Piero Ferolla, George Fisher, Grace Goldstein, Rodney J Hicks, Ben Lawrence, Yoshiyuki Majima, David C Metz, Dermot O'Toole, Philippe Ruszniewski, Bertram Wiedenmann, Ronald Hollander

International Journal of Cancer | WILEY | Published : 2019


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 informa..

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