“Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs” – a collaborative effort between the International Neuroendocrine Cancer Alliance (INCA) and Novartis, was published in the Journal of Global Oncology.

The Global NET Patient Survey is the first large, global initiative that attempts to characterize the impact of NETs from the patient perspective.


Journal of Global Oncology

Journal of Global Oncology



Impact of survey data

Despite the considerable impact of neuroendocrine tumors (NETs) on patients’ daily lives, the journey of the patient with a NET has rarely been documented, with published data to date being limited to small qualitative studies. NETs are a complex group of tumours that develop predominantly in the digestive or respiratory tracts, but can occur in many areas of the body. NETs are difficult to diagnose as the symptoms may be vague and attributed to more common problems such as irritable bowel syndrome (IBS), Crohn’s disease, peptic ulcer disease, gastritis, asthma, blood glucose problems, menopause and blood pressure problems.

This manuscript publication makes us all very proud of what INCA has achieved in collaboration with Novartis, as the survey results increase understanding of the NET patient experience and identify unmet needs, while also recognizing the significance of patient-reported data, especially collected from an international perspective,” commented Ron Hollander, INCA President and Executive Director of NET Research Foundation, USA.


The manuscript is authored by several representatives of INCA members and a recognized group of physician thought leaders in neuroendocrine cancer care:

Survey author

Simron Singh, MD (Odette Cancer Center – Sunnybrook Hospital, Canada), Dan Granberg, MD, PhD (Uppsala University Hospital, Sweden), Edward Wolin, MD,  (Montefiore Einstein Center for Cancer Care, USA), Richard Warner, MD (Mt. Sinai Hospital, USA), Maia Sissons (NET Patient Foundation, UK), Teodora Kolarova (APOZ and Friends, Bulgaria), Grace Goldstein, (Carcinoid Cancer Foundation, USA) Marianne Pavel, MD (Charité-Universitätsmedizin Berlin, Germany), Kjell Öberg, MD, PhD (Uppsala University Hospital, Sweden), and John Leyden, MD (Unicorn Foundation, Australia).



Survey results

With 1928 NET patients recruited for this survey globally, the findings brought to light the burden of NETs on patients’ daily lives, which resulted in lifestyle changes and substantial financial strain and had a negative impact on patients’ ability to work.

This survey also highlighted numerous unmet needs for patients with NETs, including the desire for better access to NET-specific medical teams (i.e., NET experts and specialist centers), as well as NET-specific treatments and information. A need for increased awareness of NETs among the medical community was also demonstrated, with patients seeking better access to more knowledgeable NET medical providers, as well as a better coordinated NET medical team. The finding that 35% of patients did not know or had not been told their tumor grade may reflect a lack of communication between patients and physicians regarding NETs.


Patients at the centre

It has been established that not only are patients more likely to be compliant with treatment if they are actively involved in their own disease management, but also they are more likely to have a better outcome if they are well informed. The findings from this survey emphasize the need for more standardized pathways of NET patient care that address ongoing issues and challenges identified by patients. Patients often reported a substantial delay in diagnosis and extensive use of healthcare resources involving large numbers of healthcare professional visits and numerous tests. Success with patient-centered approaches to NET care (improved outcomes and quality of care) is increasingly being demonstrated in multidisciplinary specialist centers.


Survey Singh2

Patient-reported outcomes are the future of medicine,” said Dr. Simron Singh, corresponding author of the article.


A key strength of this global patient-reported survey is that findings directly reflect patients’ perspectives on NETs. Having an understanding of how patients experience their disease is unique and of significant value, because it directly aligns with the new movement in healthcare toward patient-centered care. A concerted effort from clinicians and HCPs at various levels is needed to effectively interpret the data and successfully implement appropriate care processes to bring these improvements to NET patients around the globe. As regional and country-specific analyses of these survey data have also been conducted, INCA has collaborated with its organizations by country to use this information to help better inform NET patient care locally.

The first global survey of NET patient experiences – a collaborative effort between INCA and Novartis, shows the significant burden of NETs with regard to symptoms, impact on the quality of life, and healthcare resource use, while providing valuable findings that may be used in future research to gain a better understanding of this rare disease and insights regarding best practices for disease management“, said Teodora Kolarova, Executive Director of INCA.

Read the publication in Journal of Global Oncology

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