The International Neuroendocrine Cancer Alliance (INCA) supports NET patients (and their families) by advocating on their behalf to improve diagnosis, care and research. The current survey was undertaken to identify and describe unmet needs in good quality care for NET patients.
Patients and family, healthcare professionals (HCPs) and patient advocates were surveyed online (Feb-Mar 2017) completing 35 questions covering: Information; Standards of care; Diagnostics and treatment; Research.
443 responses from 26 countries were collected: 338 patient/family; 70 HCPs; 35 advocates. Patients reported several information gaps at diagnosis, which were not perceived by HCPs (Table). 46% of patients felt their needs about treatment options were fully/mostly met, compared with 88% of HCPs. Many patients (70%) sought information via patient association websites, with 62% feeling this fully/mostly met their needs. 32% of patient advocates felt appropriate standards of care are not met, particularly in terms of psychological (76%) and mental health (71%) care and holistic support (e.g. diet, exercise; 65%). While 90% of HCPs stated MDT care was always/sometime provided, only 66% of patients reported seeing a MDT. Access to Gallium-68-DOTATATE/DOTATOC PET/CT (patients 72%; HCPs 86%; advocates 85%) and PRRT (42%; 77%; 95%) were the major unmet diagnostic and treatment needs. More involvement by patients in research was desired (patients 53%; HCPs 57%; advocates: 82%), particularly in clinical trials and in raising the profile of NET research. The research priority for patients and advocates was in earlier, more accurate diagnosis, while HCPs prioritised clinical trials to improve treatment.Table: 1328P
Informational needs not met at diagnosis
|Relevant clinical trials||53%||6%|
|Signposting to patient associations||44%||4%|
|Advice on how to manage the condition||34%||1%|
The INCA survey has highlighted areas for improvement related to information provision, access to gold standard care and attention, focus and patient involvement in research.
Clinical trial identification
Legal entity responsible for the study
The International Neuroendocrine Cancer Alliance.
Neuroendocrine Tumor Research Foundation.
Strategen Limited provided editorial support.
All authors have declared no conflicts of interest.