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

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. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc. Simron SinghHonoraria: Novartis, Pfizer, Ipsen Travel, Accommodations, Expenses: Novartis, Pfizer, IpsenDan GranbergNo relationship to discloseEdward WolinHonoraria: Novartis, Ipsen, Celgene, Advanced Accelerator Applications Consulting or Advisory Role: Novartis, Ipsen, Celgene, Advanced Accelerator ApplicationsRichard WarnerHonoraria: Novartis, Pfizer, Lexicon Pharmaceuticals Consulting or Advisory Role: Novartis, Pfizer, Lexicon Pharmaceuticals Research Funding: Lexicon PharmaceuticalsMaia SissonsResearch Funding: Novartis, Ipsen, PfizerTeodora KolarovaNo relationship to discloseGrace GoldsteinCOO 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: NovartisMarianne PavelHonoraria: Ipsen, Lexicon Pharmaceuticals, Novartis, Pfizer Consulting or Advisory Role: Ipsen, Lexicon Pharmaceuticals, Novartis, Pfizer Research Funding: Novartis Travel, Accommodations, Expenses: Ipsen, NovartisKjell ÖbergNo relationship to discloseJohn LeydenPresident of the Unicorn Foundation; reports that the Foundation has received support from Novartis Australia, Pfizer Australia, and Ipsen

Figures

Fig 1

(A) The number of health care professionals (HCPs) seen before receiving a neuroendocrine tumor (NET) diagnosis. Base population: all respondents (N = 1,928). Question: Approximately how many HCPs (including all doctors, specialists, and nurses) were involved in your diagnosis of a NET? Please consider all those you saw from the time you first experienced symptoms to the time you received the diagnosis of a NET. (B) The number of health care visits made before receiving a neuroendocrine tumor (NET) diagnosis. Base population: all respondents (N = 1,928). Question: Approximately how many different visits to HCPs (including all doctors, specialists, and nurses) did you have to make? Please consider all those you saw from the time you first experienced symptoms to the time you received the diagnosis of a NET.

Fig 2

Neuroendocrine tumor (NET) symptoms experienced, often on a daily basis. Base population: all respondents (n values as indicated in figure). Questions: Which of the following symptoms, if any, do you suffer from as a result of your NET? Select all that apply. How frequently do you suffer from each of the following symptoms as a result of your NET?

Fig 3

(A) Negative impact of neuroendocrine tumors (NETs) on daily life. Base: all respondents (N = 1,928). Question: How much has each of the following areas of your life been negatively affected, if at all, by your NET? Top two box scores are shown (a moderate amount/a lot). (B) Lifestyle changes caused by having a NET. Base: all respondents (N = 1,928). Question: Since you were diagnosed with your NET, have you had to make any of the following changes? Please select all that apply. (C) Impact of NETs on work life. *For example, flexible work schedule, work from home, adaptive devices, opportunities for rest. Base population: respondents who are working full time/part time or are self-employed (n = 741). Question: Has your NET impacted you at work in any of the following ways? Please select all that apply. HCP, health care professional.

Fig 4

Patients’ beliefs regarding improvements that would help with ongoing neuroendocrine tumor (NET) management. Base population: all respondents (N = 1,928). Question: Which of the following would help with the ongoing management of your NET?