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Singh S, Granberg D, Wolin E, et al. Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs. J Glob Oncol. 2016;3(1):43-53doi: 10.1200/JGO.2015.002980.
Singh, S., Granberg, D., Wolin, E., Warner, R., Sissons, M., Kolarova, T., Goldstein, G., Pavel, M., Öberg, K., & Leyden, J. (2017). Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs. Journal of global oncology, 3(1), 43-53. https://doi.org/10.1200/JGO.2015.002980
Singh, Simron, et al. "Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs." Journal of global oncology vol. 3,1 (2017): 43-53. doi: https://doi.org/10.1200/JGO.2015.002980
Singh S, Granberg D, Wolin E, Warner R, Sissons M, Kolarova T, Goldstein G, Pavel M, Öberg K, Leyden J. Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs. J Glob Oncol. 2016 Jun 08;3(1):43-53. doi: 10.1200/JGO.2015.002980. eCollection 2017 Feb. PMID: 28717741; PMCID: PMC5493232.
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J Glob Oncol. 2016 Jun 08;3(1):43-53. doi: 10.1200/JGO.2015.002980. eCollection 2017 Feb.

Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs.

Journal of global oncology

Simron Singh, Dan Granberg, Edward Wolin, Richard Warner, Maia Sissons, Teodora Kolarova, Grace Goldstein, Marianne Pavel, Kjell Öberg, John Leyden

Affiliations

  1. , University of Toronto, Toronto, Ontario, Canada; and , Uppsala University Hospital, Uppsala, Sweden; , Montefiore Einstein Center for Cancer Care, Bronx, NY; , Mount Sinai School of Medicine, New York, NY; , NET Patient Foundation, Hockley Heath, United Kingdom; , APOZ & Friends, Sofia, Bulgaria; , The Carcinoid Cancer Foundation, Inc., White Plains, NY; , Charité Universitätsmedizin Berlin, Berlin, Germany; and , The Unicorn Foundation, Mosman, New South Wales, Australia.

PMID: 28717741 PMCID: PMC5493232 DOI: 10.1200/JGO.2015.002980

Abstract

PURPOSE: 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 heterogeneous malignancies with nonspecific symptomology, leading to extensive health care use and diagnostic delays that affect survival. A large, international patient survey was conducted to increase understanding of the experience of the patient with a NET and identify unmet needs, with the aim of improving disease awareness and care worldwide.

METHODS: An anonymous, self-reported survey was conducted (online or on paper) from February to May 2014, recruiting patients with NETs from > 12 countries as a collaboration between the International Neuroendocrine Cancer Alliance and Novartis Pharmaceuticals. Survey questions captured information on sociodemographics, clinical characteristics, NET diagnostic experience, disease impact/management, interaction with medical teams, NET knowledge/awareness, and sources of information. This article reports the most relevant findings on patient experience with NETs and the impact of NETs on health care system resources.

RESULTS: A total of 1,928 patients with NETs participated. A NET diagnosis had a substantially negative impact on patients' personal and work lives. Patients reported delayed diagnosis and extensive NET-related health care resource use. Patients desired improvement in many aspects of NET care, including availability of a wider range of NET-specific treatment options, better access to NET experts or specialist centers, and a more knowledgeable, better-coordinated/-aligned NET medical team.

CONCLUSION: This global patient-reported survey demonstrates the considerable burden of NETs with regard to symptoms, work and daily life, and health care resource use, and highlights considerable unmet needs. Further intervention is required to improve the patient experience among those with NETs.

Conflict of interest statement

Authors’ disclosures of potential conflicts of interest and contributions are found at the end of this article.The following represents disclosure information provided by authors of this manuscript. A

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