Endocrine Abstracts

Background: Neuroendocrine tumor (NET) symptoms are often similar to common conditions or may not arise until metastasis occurs, delaying diagnosis and impacting survival. We present data on time to diagnosis from the European (EU) NET patient perspective.

Methods: In 2014, 1928 NET patients from >12 countries (Europe (n=763): Belgium, Bulgaria, France, Germany, Norway, UK, and other EU countries (not specified); Americas; Asia; Oceania) participated in a survey on the NET patient experience, including diagnosis, conducted by Hall and Partners on behalf of International Neuroendocrine Cancer Alliance (INCA)/Novartis and funded by Novartis. All comparisons were significant at P<0.05.

Results: 60% of respondents reported being diagnosed <5 years ago; median time from symptom onset to diagnosis was 24 months (for overall population and patients diagnosed <5 years vs ≥5 years ago). Notably, 24% reported a ≥5-year lag for diagnosis. 63% had metastases at diagnosis (higher in patients diagnosed <5 years (67%) vs ≥5 years (57%) ago). Patients saw a mean of seven health care providers (HCPs) with a mean of 11 HCP visits prior to NET diagnosis. While 67% visited a NET specialty center (mean 4.7 times/year), only 25% were diagnosed there. For 43% of patients, NET was not the initial diagnosis, and 26% were diagnosed with NETs during testing for another condition. The most common early diagnoses were digestive disorders. Most patients (74%) did not suspect their symptoms were cancer related. Patients diagnosed <5 years ago felt more informed (able to get answers (65%)/had sufficient information (58%)) than those diagnosed ≥5 years ago (56%/48% respectively). The majority (65%) felt there was much room for improvement in NET diagnosis: 52% wanted clearer information about long-term impact; 42% wanted better direction regarding NET-related information.

Conclusion: This large global NET patient survey demonstrated delays in NET diagnosis in EU patients, consistent with global findings in the literature, and identified areas for improvement.

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