A5004474767- Neuroendocrine Tumor Research Advances
- Lung Cancer Research Studies
- Neuroblastoma Research and Treatments
- Healthcare Policy and Management
- Primary Care and Health Outcomes
- Pituitary Gland Disorders and Treatments
- Myasthenia Gravis and Thymoma
- Cardiac, Anesthesia and Surgical Outcomes
- Data-Driven Disease Surveillance
- Lung Cancer Treatments and Mutations
- Childhood Cancer Survivors' Quality of Life
- Gestational Trophoblastic Disease Studies
- Social Media in Health Education
- Health, Environment, Cognitive Aging
- Genetic and Kidney Cyst Diseases
- Hemophilia Treatment and Research
- Breast Cancer Treatment Studies
- Genetic Syndromes and Imprinting
- Pain Management and Opioid Use
- Palliative Care and End-of-Life Issues
- Biomedical Research and Pathophysiology
- Metastasis and carcinoma case studies
- Global Health Care Issues
- Lymphoma Diagnosis and Treatment
- Advanced Breast Cancer Therapies
Carcinoid Cancer Foundation
2015-2024
Uppsala University Hospital
2016
Sheba Medical Center
2002
Despite the considerable impact of neuroendocrine tumors (NETs) on patients' daily lives, journey patient with a NET has rarely been documented, published data to date being limited small qualitative studies. NETs are heterogeneous malignancies nonspecific symptomology, leading extensive health care use and diagnostic delays that affect survival. A large, international survey was conducted increase understanding experience identify unmet needs, aim improving disease awareness worldwide.An...
The aim of this survey was to examine the experience patients with neuroendocrine tumors (NETs) raise awareness NET-related burden and identify unmet needs. Here, we report data from in United States.Patients NETs participated a 25-minute anonymous survey, conducted primarily online February May 2014. Survey questions captured information on sociodemographics, clinical characteristics, NET diagnostic experience, disease impact/management, interaction medical teams, knowledge/awareness.Of...
TPS514 Background: Gastroenteropancreatic neuroendocrine tumors (GEP-NETs), which represent approximately 70% of NETs, frequently develop metastatic disease with limited treatment options. Current standard therapies for well-differentiated high grade 2 and 3 GEP-NETs include cytoreductive procedures, somatostatin analogues, molecular targeted (everolimus or sunitinib), chemotherapy peptide receptor radionuclide therapy (PRRT), no specified sequence use. PRRT may stabilize induce objective...
Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need assess any gaps in awareness care. A survey was undertaken 2017 identify perceived unmet needs from perspectives patients/families, patient advocates health care professionals (HCPs). The consisted 33–37 questions (depending on type respondent) across four areas: information, care, treatments research. In total, 443 participants 26 countries responded: 338 35 70 HCPs. Perceived regarding provision...
e17739 Background: Lung NETs are rare and often asymptomatic; diagnosis may thus be substantially delayed, impacting survival. We present global data on pts' experiences with lung NETs. Methods: In 2014 (Feb-May), 1928 NET pts from > 12 countries (Americas, Asia, Europe, Oceania) participated in a survey, conducted by Hall & Partners behalf of INCA/Novartis funded Novartis, the pt experience (comparisons significant at P< 0.05). Results: 12% had NETs, primarily nonfunctional/asymptomatic...
Neuroendocrine tumors (NETs) negatively impact patients' quality of life. Octreotide long-acting release (LAR) and lanreotide depot are somatostatin analogs (SSAs) approved to treat NETs. The study objective was explore SSA treatment experiences preferences patients with NETs.Qualitative interviews were conducted in US adults (≥ 21 years) NETs who had ≥ 6 months' each transitioned from octreotide LAR within the previous year. Participants asked open-ended questions about their depot,...
Searchable abstracts of presentations at key conferences in endocrinology ISSN 1470-3947 (print) | 1479-6848 (online)
151 Background: Patients with advanced neuroendocrine tumors (NETs) may develop carcinoid syndrome, a rare condition characterized by debilitating symptoms including diarrhea, flushing and valvular heart damage that can greatly affect patient social physical functioning. Limited information is available on the physician perceptions of syndrome areas differ from patients. The Carcinoid Syndrome Impact Survey probed potential gaps in oncologist, caregiver perception overall burden disease....
Patient surveys of disease burden on daily living rarely explore the impact that patient information sources can have optimizing care. To identify unmet needs/possible solutions for and support to address physical, emotional, informational challenges patients with neuroendocrine tumors (NETs) may have, an online survey was conducted among recruited by Carcinoid Cancer Foundation (US), Netzwerk Neuroendokrine Tumoren (NeT) e.V. (Germany), Association de Patients porteurs Tumeurs Endocrines...
Searchable abstracts of presentations at key conferences in endocrinology ISSN 1470-3947 (print) | 1479-6848 (online)
Abstract Background Long-acting somatostatin analogs (LA SSAs) are approved and recommended for the treatment of patients with advanced neuroendocrine tumors (NETs). Given long duration therapy differences in administration routes, it is important to understand patients’ experiences receiving LA SSA injections. Methods We conducted a serial survey, informed by qualitative interviews eight treated SSAs two nurses who administer injections, among undergoing over 28-day period (administered at...
6 Background: The aim of this global patient survey was to better understand the needs and expectations patients with NETs regarding access diagnostic tools treatment. Methods: In 2017, an online, questionnaire NET patients/family members, advocates healthcare professionals (HCPs) conducted. Results: total, 443 participants from 26 countries responded: 338 patients/families; 35 advocates; 70 HCPs. Following diagnosis, many use association (69%) HCP (48%) websites fulfill their informational...
Background: There is a lack of knowledge regarding the experience patients with neuroendocrine tumors (NET) in France. Materials & methods: A patient survey that captured information on diagnosis, disease impact/management and awareness was conducted. Data respondents from France were analyzed compared US data as reference. Results: Key topics included delays negative impact quality life, access to NET medical experts treatments, treatments. Significant differences observed between USA...
e17737 Background: NETs are a rare heterogeneous group of malignancies commonly diagnosed at an advanced stage. The chronic nature and unpredictable disease course can result in challenging journey for NET pts, as well lack common management pathway. Little is currently known about the patient experience NETs. Methods: In 2014 (Feb-May), 1928 pts from > 12 countries (Americas, Asia, Europe, Oceania) participated anonymous online or paper survey on pt conducted by Hall & Partners behalf...
e17738 Background: International guidelines support an MDT approach to NETs. The impact of care on NET pts has not been examined globally. We present global data the pt perspective regarding by tumor type. Methods: In 2014 a survey experience involving from > 12 countries (Americas, Asia, Europe, Oceania) was conducted Hall & Partners behalf INCA/Novartis and funded Novartis. Comparisons significant at P< .05. Results: 1928 participated (54% gastrointestinal [GI] NETs; 22% pancreatic...
Introduction: Neuroendocrine tumors (NETs) are heterogeneous malignancies often found in the GI system. Symptoms may be similar to common conditions, leading delays diagnosis (dx) and extensive healthcare use. Methods: An anonymous survey of 1928 NET patients from >12 countries (Americas, Asia, Europe, Oceania), including United States (n=758), was conducted Feb-May 2014 on patient experience by Hall & Partners behalf INCA/Novartis, funded Novartis. US analyses were performed relative impact...
299 Background: Surveys of neuroendocrine tumor (NET) burden on daily living rarely explore the impact that patient information sources can have optimizing care. This subset a large US survey focused identifying unmet needs, and available support address physical, emotional informational challenges patients with NETs experience. Methods: The Carcinoid Cancer Foundation is US, non-profit organization encourages supports research education carcinoid related NETs. A Foundation-approved was...