Aim: The International Neuroendocrine Cancer Alliance (INCA) undertook a survey to assess needs in quality care for NET patients.
Methods: In 2017, patients and family, healthcare professionals (HCPs) and patient advocates completed an online survey about NET information, standards of care, diagnostics/treatment and research.
Results: There were 443 respondents from 26 countries (338 patient/family; 70 HCPs; 35 advocates). Patients reported several information gaps at diagnosis that were not perceived by HCPs: relevant clinical trials (53% vs. 6%, respectively); NETs research (53% vs. 6%); psychological care (48% vs. 13%); signposting to patient associations (44% vs. 4%); advice on management (34% vs. 1%). Only 16% of patients felt their needs for information about treatment options were fully met (vs. 41% of HCPs). Many patients use patient association (70%) or HCP (49%) websites for information, with 53% finding this fully/mostly meets their needs. No advocates felt that patient needs at diagnosis were fully met, and over 32% believed that appropriate standards of care were not met, particularly related to psychological (76%) and mental health (71%) care and holistic support (65%). Nearly all (94%) advocates reported MDTs were available in their region and 70% of HCPs said care was by MDT; however, only 66% of patients reported MDT access. Overall, 50%of patients felt fully/mostly involved in decision making. Access to Gallium-68-DOTATATE/DOTATOC PET/CT scanning (patients 72%; HCPs 86%; advocates 85%) and PRRT (42%; 77%; 95%) were considered key challenges. Half of patients (48%) reported travelling >300km/186 miles to see a specialist. Patient involvement in research was a priority (patients 53%; HCPs 57%; advocates 82%), with patients and advocates focussed on earlier, more accurate diagnosis and HCPs on clinical drug trials.
Conclusions: There are major gaps in fulfilling the informational needs of patients, providing access to gold-standard care, and involving patients in research.