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

Singh, Simron (författare)
Univ Toronto, Toronto, ON, Canada
Granberg, Dan (författare)
Uppsala universitet,Onkologisk endokrinologi
Wolin, Edward (författare)
Montefiore Einstein Ctr Canc Care, Bronx, NY USA
visa fler...
Warner, Richard (författare)
Mt Sinai Sch Med, New York, NY USA
Sissons, Maia (författare)
NET Patient Fdn, Hockley Heath, England
Kolarova, Teodora (författare)
APOZ & Friends, Sofia, Bulgaria
Goldstein, Grace (författare)
Carcinoid Canc Fdn Inc, White Plains, NY USA
Pavel, Marianne (författare)
Charite Univ Med Berlin, Berlin, Germany
Öberg, Kjell, 1946- (författare)
Uppsala universitet,Endokrin tumörbiologi
Leyden, John (författare)
Unicorn Fdn, Mosman, NSW, Australia
Granberg, D (författare)
Karolinska Institutet
Goldstein, G (författare)
Öberg, K (författare)
Kolarova, T (författare)
Wolin, E (författare)
Pavel, M (författare)
Leyden, J (författare)
Singh, S (författare)
Warner, R (författare)
Sissons, M (författare)
visa färre...
Ingår i: Journal of global oncology. - 2378-9506. ; 3:1, s. 43-53
  • Tidskriftsartikel (refereegranskat)
Abstract Ämnesord
  • 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.


MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Cancer and Oncology (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Cancer och onkologi (hsv//swe)
MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine (hsv//eng)

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