The diagnosis of cancer imposes physical, emotional and financial burdens on patients. So far, the socio-economic impact of cancer for patients in Germany is poorly understood. The aim of the project is to provide an overview on patients' financial losses due to a neuroendocrine tumor (NET) diagnosis as well as possible psychosocial effects.
This prospective quantitative study recruited n = 123 patients with NET from November 2016 to March 2017 at the National Center for Tumor Diseases, University Hospital Heidelberg. They completed a survey on patients' income, cancer-related out-of-pocket costs, disease burden (Distress Thermometer), quality of life (EORTC-LQ 29/30), health status (EQ-5D) and demographic data.
78.0% (n = 96) of the patients stated to have higher out-of-pocket costs because of their disease, mostly in terms of travel expenses and co-payments for medication. With regard to loss of income, 29.3% (n = 36) of the participants reported a minus, which is beyond 800€per month in almost half (44.4%) of these cases. 61.5% of the persons affected by income losses cannot compensate these by savings or credits. 33.3% (n = 41) of the responding patients indicated that they have to cut back on their expenses of daily living as a result of their disease. Higher cancer-related out-of-pocket costs per month were associated with lower estimation of patient's quality of life (p = 0.003), lower self-reported health status (p = 0.013) and a more severe perception of disease burden (p = 0.036) whereas a higher monthly income was strongly correlated with better quality of life (p=.008)/health status (p = 0.008) and lower disease burden (p = 0.006).
Given the fact that the majority of surveyed patients has to face financial losses due to their cancer diagnosis which is accompanied by the experience of distress as well as worsened quality of life and health status, there is a need for targeted measures that could prevent financial problems and reduce emotional burdens. Further research is required to address this aim.
Clinical trial identification
The trial was approved by the Instituional Research Ethics Committee (approval S-458/2016).
Legal entity responsible for the study
National Center for Tumor Diseases, University Hospital Heidelberg
Ipsen Pharma GmbH
All authors have declared no conflicts of interest.