Aim of the Survey

  • To increase understanding of the experiences, needs and challenges of NET patients
  • To provide insights and learnings among countries and regions to advance NET care

NET Participation in the Survey

  • Almost 2000 patients from over 12 countries and four continents
  • Participation from 164 Canadian NET patients
  • Patients participated from February through May 2014
  • Survey was online and took 25 minutes to complete


– Faster time to diagnosis in recent years
– Average time to diagnosis was 4.3 years at time of this study
– Patients report seeing an average of 6 Health Care Professionals over 12 visits before getting a diagnosis
– Nearly one third of patients got diagnosed with something else first
– NETS reported to have a big impact on a patient’s physical and emotional health
– More awareness needed about NETS
– NET patients feel supported by their Health Care Professionals and many other people
– NET patients reported seeing a wide range of Health Care professionals (Oncologists and GPs the most often visited)
– Only half reported that their NET medical team worked as a well-coordinated team
– The majority of respondents play an active role in their treatment decisions
– Half of patients felt their NET treatments available were good or very good
– The vast majority of NET patients reported their life quality was negatively affected by their disease
– Patients reported making a number of lifestyle changes
– Patients reported that NETS had a major impact on their working lives
– Respondents believe that access to specific NET medications and medical teams will help them to live with their condition better


Canadian Quality of Life Results

Global Challenges to Diagnosis

Global Quality of Life Results

Global Multidisciplinary Approach Results