So far, the patient-level effect of the cost of cancer care is a topic that has been discussed primarily in the US health care system. In Germany, the economic impact of cancer is poorly understood. This study aims to provide data on consequences of a neuroendocrine (NET) or colorectal (CRC) tumor diagnosis on patients' financial situation.
(1) With a systematic literature review we identified instruments and dimensions that have been used to measure “subjective financial burden”. (2) Informed by this analysis a survey on income, cancer-related out-of-pocket costs, distress (DT), and quality of life (EORTC-LQ) was developed and applied in a prospective study which recruited 247 patients (n=125 CRC/n=122 NET) from 11/2016-3/2017 at the National Center for Tumor Diseases, Germany.
(1) Out of 40 eligible studies only 13 used pre-existing instruments. Three major dimensions to assess the subjective financial burden were identified: (i) material aspects consisting of financial spending and financial resources of the patients, (ii) psychological effects and (iii) behavioral changes including support seeking and coping strategies concerning the organization of care and lifestyle. The most common dimension queried in the studies were material aspects, whereas behavioral changes and in particular support seeking, were the least integrated themes within the studies. (2) In our survey, 80.6% (n=199) of patients stated to have higher out-of-pocket costs, 37.2% (n=92) reported income loss as a sequel to their disease. A multiple linear regression analysis showed effects of economic deteriorations on patient's quality of life and distress: high financial loss relative to income was significantly associated with a lower estimation of patient's quality of life (p=0.00) and more distress (p=0.00).
While some standardized instruments already are available for the US context, a valid instrument to measure the subjective financial effects of cancer is needed for the German context. As distress and reduced quality of life due to financial problems seem to intensify the burden that already results from a cancer diagnosis, there is a need for targeted support measures at the individual and system level.