ArticlePancreas
Patient-Reported Experience of Diagnosis, Management, and Burden of Neuroendocrine Tumors: Results From a Large Patient Survey in the United States.
Article in Pancreas. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 1 of them a synthesis that pooled it.
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Who cites it
32 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Evaluating home injection compared with healthcare-setting injection of somatostatin analogs: a systematic literature review.Endocrine · 2023Pooled it
- Quality of life and care experiences in a US multi-institutional neuroendocrine tumor cohort.Journal of the National Cancer Institute · 2026Article
- Radioligand Therapy and Sequencing in Gastroenteropancreatic Neuroendocrine Tumors: A Patient Perspective Review.JCO oncology practice · 2026Review
- Characterisation of adult patients with neuroendocrine neoplasms and their journey to diagnosis.BJC reports · 2026Article
- Quality of life as a predictor for survival in patients with small intestinal neuroendocrine tumours.Journal of neuroendocrinology · 2025Article
- Investigating fatigue in adults with neuroendocrine neoplasms using a biopsychosocial model.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Observational
- Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations.Orphanet journal of rare diseases · 2025Review
- Earlier diagnosis of small intestine neuroendocrine tumours (SI-NETs) through transformation of the South Wales NET service.Journal of neuroendocrinology · 2025Article
- The radiologic spectrum of neuroendocrine tumors in emergent care.Reviews in endocrine & metabolic disorders · 2025Review
- Bone and muscle mass characteristics in patients with gastroenteropancreatic neuroendocrine neoplasms.Endocrine · 2025Article
- Article
- Identifying patients with undiagnosed small intestinal neuroendocrine tumours in primary care using statistical and machine learning: model development and validation study.British journal of cancer · 2024Article
- Sarcopenia and Neuroendocrine Neoplasms.Current oncology reports · 2024Review
- Practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care.Endocrine-related cancer · 2023Review
- 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
- Prevalence of Sarcopenia and Impact on Survival in Patients with Metastatic Gastroenteropancreatic Neuroendocrine Tumours.Cancers · 2023Article
- Lanreotide Depot to Treat Gastroenteropancreatic Neuroendocrine Tumors in a US Community Oncology Setting: A Prospective, Observational Study.Oncology and therapy · 2022Article
- Clinical Management of Neuroendocrine Neoplasms in Clinical Practice: A Formal Consensus Exercise.Cancers · 2022Article
- Patterns of Use and Clinical Outcomes with Long-Acting Somatostatin Analogues for Neuroendocrine Tumors: A Nationwide French Retrospective Cohort Study in the Real-Life Setting.Advances in therapy · 2022Observational
- Time from first tumor manifestation to diagnosis in patients with GEP-NET: Results from a large German tertiary referral center.Medicine · 2021Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesThe 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.
methodsPatients 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.
resultsOf 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 had a 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.
conclusionsThis 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.
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