The Economic Impact on Australian Patients with Neuroendocrine Tumours

Louisa G. Gordon (), Thomas M. Elliott, Kate Wakelin, Simone Leyden, John Leyden, Michael Michael, Nick Pavlakis, Jan Mumford, Eva Segelov and David K. Wyld
Additional contact information
Louisa G. Gordon: QIMR Berghofer Medical Research Institute, Royal Brisbane Hospital
Thomas M. Elliott: QIMR Berghofer Medical Research Institute, Royal Brisbane Hospital
Kate Wakelin: Unicorn Foundation
Simone Leyden: Unicorn Foundation
John Leyden: Unicorn Foundation
Michael Michael: Neuroendocrine Unit (ENETs Centre of Excellence), Peter MacCallum Cancer Centre
Nick Pavlakis: Royal North Shore Hospital
Jan Mumford: CommNETS
Eva Segelov: Monash University and Monash Health
David K. Wyld: Queensland University of Technology

The Patient: Patient-Centered Outcomes Research, 2020, vol. 13, issue 3, No 9, 363-373

Abstract: Abstract Background and Objective Little is known about the economic burden to patients and families with neuroendocrine tumours (NETs) for medical out-of-pocket expenses and employment decisions. This study was performed to determine the extent and factors influencing the financial consequences of living with NETs and their effect on quality of life. Methods We undertook an online cross-sectional survey using a targeted approach and collected Australian Medicare claims data. Validated surveys measured health-related quality of life (EuroQol 5-dimension 5-level [EuroQol-5D-5L]) and financial toxicity (COmprehenSive Financial Toxicity [COST]), supplemented with questions on employment and retirement, insurance and out-of-pocket medical expenses. Generalised linear models were performed to assess determinants of quality of life and out-of-pocket expenses recorded by Medicare. Results The survey was answered by 204 patients with a mean age of 59 years who were diagnosed on average 5.2 years ago. Self-reported mean costs were 1698 Australian dollars ($A) (standard deviation [SD] $A2132) over 3 months (median $A877) and were highest for medical tests (mean $A376 [17% of total costs], SD $A722), travel-related expenses (mean $A289 [13%], SD $A559), and specialist visits (mean $A225 [10%], SD $A342) ($A1 = $US0.69). Imaging scans, surgery and travel expenses were the most common cost burdens reported by patients. Having private health insurance was the key determinant of higher out-of-pocket costs. Poorer quality of life was significantly associated with higher financial toxicity, not working due to cancer, nausea/diarrhoea, two or more co-morbidities and younger age. Conclusions Medical expenses are substantial for some patients with NETs. Quality of life is adversely affected for patients experiencing financial toxicity and avoiding early retirement is an important issue for supportive care services.

Date: 2020
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DOI: 10.1007/s40271-020-00412-z

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