TY - JOUR
T1 - Patient-reported burden of a neuroendocrine tumor (NET) diagnosis
T2 - Results from the first global survey of patients with NETs
AU - Singh, Simron
AU - Granberg, Dan
AU - Wolin, Edward
AU - Warner, Richard
AU - Sissons, Maia
AU - Kolarova, Teodora
AU - Goldstein, Grace
AU - Pavel, Marianne
AU - Öberg, Kjell
AU - Leyden, John
N1 - Funding Information:
Supported by Novartis Pharmaceuticals and conducted as an equal collaboration between the International Neuroendocrine Cancer Alliance and Novartis. Medical editorial writing assistance was provided by ApotheCom Associates (Yardley, PA) and was funded by Novartis. Authors’ disclosures of potential conflicts of interest and contributions are found at the end of this article. Corresponding author: Simron Singh, MD, MPH, FRCP(C), Odette Cancer Center—Sunnybrook Hospital, 2075 Bayview Ave, Room T2-047, Toronto, ON M4N 3M5, Canada; e-mail: simron.singh@sunnybrook.ca.
Funding Information:
COO of The Carcinoid Cancer Foundation, Inc.; reports that the Foundation has received grants from Novartis, Ipsen, Advanced Accelerator Applications, and Lexicon Pharmaceuticals Travel, Accommodations, Expenses: Novartis
Publisher Copyright:
© 2016 by American Society of Clinical Oncology Licensed under the Creative Commons Attribution 4.0 License.
PY - 2017/2/1
Y1 - 2017/2/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85096760543&partnerID=8YFLogxK
U2 - 10.1200/JGO.2015.002980
DO - 10.1200/JGO.2015.002980
M3 - Review article
AN - SCOPUS:85096760543
SN - 2378-9506
VL - 3
SP - 43
EP - 53
JO - JCO Global Oncology
JF - JCO Global Oncology
IS - 1
ER -