Results from the survey “Quality-of-life”, patients with neuroendocrine tumors (NET)1.

The survey gathered information on the NET patient experience, including diagnosis, disease impact and management, quality of life, and knowledge and awareness levels.


Quality of life results Multidisciplinary approach Challenges of diagnosing


“This is the first time the NET patient experience has been quantified on a global level, and it confirms for us the devastating impact this rare cancer can have on patients’ lives,” said Teodora Kolarova, INCA President. “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.”

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 …..