{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"omics_type":["Unknown"],"volume":["146(5)"],"submitter":["Leyden S"],"funding":["Neuroendocrine Tumor Research Foundation"],"pubmed_abstract":["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. Addit"],"journal":["International journal of cancer"],"pagination":["1316-1323"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC7004101"],"repository":["biostudies-literature"],"pubmed_title":["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."],"pmcid":["PMC7004101"],"pubmed_authors":["Wiedenmann B","Caplin M","Hicks RJ","Hollander R","Goldstein G","O'Toole D","International Neuroendocrine Cancer Alliance (INCA)","Fisher G","Falconi M","Davies P","Kolarova T","Metz DC","Majima Y","Ferolla P","Bouvier C","Leyden S","Dureja S","Lawrence B","Ruszniewski P","Conroy S"],"additional_accession":[]},"is_claimable":false,"name":"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.","description":"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. Addit","dates":{"release":"2020-01-01T00:00:00Z","publication":"2020 Mar","modification":"2025-04-18T17:59:22.927Z","creation":"2020-05-22T09:54:41Z"},"accession":"S-EPMC7004101","cross_references":{"pubmed":["31509608"],"doi":["10.1002/ijc.32678"]}}