ArticleJournal of global oncology2017
Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs.
Article in Journal of global oncology, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 2 registered trials, which are not on this map. Cited by 86 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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.
Financial Toxicity and Patient-Reported Outcomes in Italian Patients Affected by Gastroenteropancreatic Neuroendocrine Neoplasms (GEP-NEN)
Survival Without Persistent Limiting Toxicity: a Real Life Prospective Cohort of Advanced Neuroendocrine Tumor Followed in the French ENDOCAN-RENATEN and GTE Networks
Who cites it
86 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Peptide receptor chemoradionuclide therapy for neuroendocrine neoplasms: A systematic review.Journal of neuroendocrinology · 2025Pooled it
- A Randomized Trial Evaluating Patient Experience and Preference Between Octreotide Long-Acting Release and Lanreotide for Treatment of Well-Differentiated Neuroendocrine Tumors.JCO oncology practice · 2022Trial
- TELEPRO: Patient-Reported Carcinoid Syndrome Symptom Improvement Following Initiation of Telotristat Ethyl in the Real World.The oncologist · 2019Trial
- Health-Related Quality of Life in Patients With Progressive Midgut Neuroendocrine Tumors Treated WithJournal of clinical oncology : official journal of the American Society of Clinical Oncology · 2018Trial
- Quality of life and care experiences in a US multi-institutional neuroendocrine tumor cohort.Journal of the National Cancer Institute · 2026Article
- Assessing Patient Characteristics in Neuroendocrine Tumor Research: A Comparison of the NET-PRO Study to SEER Population-Based Data.Endocrine · 2026Article
- Radioligand Therapy and Sequencing in Gastroenteropancreatic Neuroendocrine Tumors: A Patient Perspective Review.JCO oncology practice · 2026Review
- Enhancing Diagnostic Pathways for Bronchopulmonary Neuroendocrine Tumors: Assessment of the South Wales Neuroendocrine Tumor Service Transformation.Thoracic cancer · 2026Article
- Characterisation of adult patients with neuroendocrine neoplasms and their journey to diagnosis.BJC reports · 2026Article
- Patient-reported symptom and urgent healthcare use in neuroendocrine tumors.Endocrine oncology (Bristol, England) · 2026Article
- Carcinoid Syndrome Impacts Long-Term Outcomes After Hepatectomy for Small Bowel Neuroendocrine Tumor Liver Metastasis.Annals of surgical oncology · 2026Article
- Attribute Preferences for Somatostatin Analogues in Neuroendocrine Tumours (NETs) Among Patients, Clinicians and Nurses in Australia.Cancer medicine · 2025Article
- Quality of life as a predictor for survival in patients with small intestinal neuroendocrine tumours.Journal of neuroendocrinology · 2025Article
- Safety profile of lanreotide: a retrospective post-marketing pharmacovigilance study based on the real-world data from FAERS database.Endocrine · 2025Article
- Identification of miRNA/FGFR2 Axis in Well-Differentiated Gastroenteropancreatic Neuroendocrine Tumors.International journal of molecular sciences · 2025Article
- Personal Health Record Software for Neuroendocrine Tumors: Patient-Centered Design Approach.JMIR human factors · 2025Article
- Nutritional status and gastroenteropancreatic neuroendocrine neoplasms: lights and shadows with a clinical guide from the NIKE Group.Reviews in endocrine & metabolic disorders · 2025Review
- Earlier diagnosis of small intestine neuroendocrine tumours (SI-NETs) through transformation of the South Wales NET service.Journal of neuroendocrinology · 2025Article
- A Five-Year Journey to Diagnosis: Resolving Persistent Hypoglycemia Through Successful Insulinoma Resection-A Case Report.Clinical case reports · 2025Article
- A Challenging Decision: Identifying and Managing Hepatic Hydrothorax in the Setting of a Pancreatic Neuroendocrine Tumor.Case reports in gastrointestinal medicine · 2025Article
26 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeDespite the considerable impact of neuroendocrine tumors (NETs) on patients' daily lives, the journey of the patient with a NET has rarely been documented, with published data to date being limited to small qualitative studies. NETs are heterogeneous malignancies with nonspecific symptomology, leading to extensive health care use and diagnostic delays that affect survival. A large, international patient survey was conducted to increase understanding of the experience of the patient with a NET and identify unmet needs, with the aim of improving disease awareness and care worldwide.
methodsAn anonymous, self-reported survey was conducted (online or on paper) from February to May 2014, recruiting patients with NETs from > 12 countries as a collaboration between the International Neuroendocrine Cancer Alliance and Novartis Pharmaceuticals. Survey questions captured information on sociodemographics, clinical characteristics, NET diagnostic experience, disease impact/management, interaction with medical teams, NET knowledge/awareness, and sources of information. This article reports the most relevant findings on patient experience with NETs and the impact of NETs on health care system resources.
resultsA total of 1,928 patients with NETs participated. A NET diagnosis had a substantially negative impact on patients' personal and work lives. Patients reported delayed diagnosis and extensive NET-related health care resource use. Patients desired improvement in many aspects of NET care, including availability of a wider range of NET-specific treatment options, better access to NET experts or specialist centers, and a more knowledgeable, better-coordinated/-aligned NET medical team.
conclusionThis global patient-reported survey demonstrates the considerable burden of NETs with regard to symptoms, work and daily life, and health care resource use, and highlights considerable unmet needs. Further intervention is required to improve the patient experience among those with NETs.
Identifiers
What OpenQuestion holds
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.