Results from the global survey “Quality-of-life”, patients with neuroendocrine tumors (NET)1. Presented at ENETS, European Neuroendocrine Tumor Society, in Barcelona.

NET Cancer patient experience, including diagnosis, disease impact and management, quality of life, and knowledge and awareness levels.


   ENETS-Leyden et al_NET Patient Perspective poster_FINAL     ENETS_Pavel et al_ TimeToDiagnosis poster_FINAL  ENETS_Oberg et al_MDT_NET Patient Survey_FINAL  ENETS Ruszniewski et al_ NET Patient Experience_FINALPoster
 Patient Perspective  Time to Diagnosis  Multidisciplinary team  Patient Experience

“We hope these survey findings help give people with this type of cancer a voice, and educate the public and healthcare professionals about the personal side of this disease.” said Teodora Kolarova, INCA President.
The survey results showed that the vast majority of respondents (71%) reported their quality of life was negatively affected by their disease and up to 92% made lifestyle changes as a result of their NET1. Specific areas impacted by NETs include work, emotional health and lifestyle1.


About the survey

The goal of the Global NET Patient Survey was to increase understanding of the experiences, needs and challenges of NET patients, and provide insights and learnings between countries and regions to advance NET care on a global level1.

The Global NET Patient Survey was fielded between February 2014 and May 31, 2014, and included 1,928 patients from 12 countries1.

The survey is a collaboration between Novartis and International Neuroendocrine Cancer Alliance; initial set of results released in conjunction with NET Cancer Day


The International Neuroendocrine Cancer Alliance (INCA)

The International Neuroendocrine Cancer Alliance (INCA) is a network of charitable organizations and patient groups from 14 countries that aims to be the global voice in support of people living with neuroendocrine tumors (NETs). The organization is dedicated to being the global advocate for NET patients and works toward a world where all NET patients get a timely diagnosis, the best care and ultimately a cure. For more information on INCA visit INCA is also on Facebook at NET Cancer Day, and on Twitter, @netcancerday.


Read more about the “Quality-of-life” survey here …..