ArticleInternational journal of cancer2020
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.
Article in International journal of cancer, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 31 citations in OpenAlex.
- Efficacy and Safety of Endoscopic Ultrasound-Guided Radiofrequency Ablation for Pancreatic Neuroendocrine Tumors: A Systematic Review and Metanalysis.Medicina (Kaunas, Lithuania) · 2023Pooled it
- Quality of life and care experiences in a US multi-institutional neuroendocrine tumor cohort.Journal of the National Cancer Institute · 2026Article
- FROM DISCOVERY SCIENCE TO THE CLINIC - HERITABLE ENDOCRINE CANCERS AND RELATED DISORDERS: Functional imaging in hereditary endocrine neoplasms: evolving modalities and clinical implications.Endocrine-related cancer · 2026Review
- Radioligand Therapy and Sequencing in Gastroenteropancreatic Neuroendocrine Tumors: A Patient Perspective Review.JCO oncology practice · 2026Review
- Role of endoscopic ultrasound in the treatment of pancreatic neuroendocrine tumors: Lights and shadows of endoscopic ultrasound-guided radiofrequency ablation.World journal of gastrointestinal endoscopy · 2026Review
- 'I knew I had to drive my own bus': perspectives of patients and healthcare professionals on improving information provision to rare cancer survivors.Journal of cancer survivorship : research and practice · 2025Article
- Appropriate use of tissue sampling and somatostatin receptor PET imaging in the diagnosis of pancreatic neuroendocrine tumors: results of an International Delphi Consensus.Surgical endoscopy · 2025Article
- Navigating care: understanding cancer patients' experiences with systemic radionuclide therapy.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Are Neuroendocrine Neoplasms No Longer a Rare Cancer?Neuroendocrinology · 2025Review
- Lost in translation: evaluating the readability of online patient information for neuroendocrine tumors.Endocrine · 2024Article
- Altered CELF4 splicing factor enhances pancreatic neuroendocrine tumors aggressiveness influencing mTOR and everolimus response.Molecular therapy. Nucleic acids · 2024Article
- Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators.Frontiers in medicine · 2024Article
- Proposed Implementation of a Patient-Centered Self-Assessment Tool for Patients with Neuroendocrine Tumors among Academic and Community Practice Sites: The City of Hope Model.Journal of clinical medicine · 2023Article
- Epidemiology of neuroendocrine neoplasmas in Japan: based on analysis of hospital-based cancer registry data, 2009 - 2015.BMC endocrine disorders · 2022Article
- Psychological distress and resilience in patients with gastroenteropancreatic neuroendocrine tumor.Frontiers in endocrinology · 2022Article
- Evaluating cost-effectiveness in the management of neuroendocrine neoplasms.Reviews in endocrine & metabolic disorders · 2021Review
- The Role of Patient Support Groups in Neuroendocrine Neoplasms.Current oncology reports · 2021Review
- Consensus on molecular imaging and theranostics in neuroendocrine neoplasms.European journal of cancer (Oxford, England : 1990) · 2021Review
Corrections and comments
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Authors and funding
20 authors at 19 institutions in 9 countries.
Funding
No grant is acknowledged in the PubMed record.
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. 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.