Endocrine Abstracts

Background: NETs are a rare heterogeneous group of malignancies, often with a delayed diagnosis. Although diagnosis of NETs is increasing (due in part to greater awareness), little has been published on the NET patient experience. We present data on the EU NET patient perspective.

Methods: In 2014, 1928 NET patients from >12 countries, including EU (n=763: Belgium, Bulgaria, France, Germany, Norway, UK, other EU countries (not specified by respondents)), participated in a survey on the NET patient experience conducted by Hall & Partners on behalf of INCA/Novartis and funded by Novartis. Comparisons were significant at P<0.05.

Results: EU patient-reported NET types included gastrointestinal/pancreatic (GI/pNETs, 53%/27%), lung/thymus (11%), and other/unknown (13%). Most patients reported G1/G2 (67%) functional disease (44%); GI NETs were more likely than pNETs to be low grade (G1: 50% vs 32%) and functional (58% vs 23%). 63% of NETs had metastasized at diagnosis (significantly greater for GI/pNETs (71%/62%) than lung NETs (37%)). 41% reported fair/poor health, and 72% said NETs had a negative impact on their lives, including overall energy levels (70%) and emotional health (60%). Having NETs made patients feel anxious/worried (46%) and concerned (44%). Patients made numerous lifestyle adjustments, including dietary changes (GI/pNET, 54%/55%; lung NET, 34%) and increased travel (47%)/related spending (41%) for medical appointments. 87% of respondents not working (n=163) stopped due to NETs; 30% of retirees (n=295) had to stop working earlier than planned. Patients felt well supported by their medical team, particularly endocrinologists (78%), nuclear medicine specialists (75%), and oncologists/nurses (74%/74%). Patients believed more awareness of NETs (38%), information regarding how to manage disease/treatment-related symptoms (37%/33%), and increased access to NET-specific treatments/medical teams (37%/36%) would help them live better with NETs.

Conclusion: This large global NET patient survey demonstrated a substantial impact of NETs on EU patients and identified areas for improvement.

Disclosure: The Global NET Patient Survey was conducted as a collaboration between the International Neuroendocrine Cancer Alliance (INCA) and Novartis Pharmaceuticals. Funding for this survey was provided by Novartis.