The work also highlights the absence of clear definitions and valid instruments with which to examine this issue. Prof. Eva Winkler, study author, medical oncologist at the National Centre for Tumour Diseases (NCT) in Heidelberg, explained the background: “We conducted a systematic literature review of the tools used to measure the subjective financial burden of cancer patients: of the 39 studies we found, most came from the USA, and the instruments they used were either not transferable to the German context or not sufficiently focused on the subject,” she said.
Study co-author Dr. Katja Mehlis from the NCT added: “We were, however, able to identify three broad dimensions through which subjective financial burden could be assessed: material aspects, psychological effects and behavioral changes such as support seeking and coping strategies. Based on this, we developed our own, yet a non-validated set of questions covering income, cancer-related out-of-pocket costs, distress, and lifestyle changes.”
A total of 247 patients, 122 diagnosed with neuroendocrine tumors and 125 treated for colorectal cancer, responded to the survey between November 2016 and March 2017. The results brought to light financial impacts in a significant proportion of patients: 80.6% of respondents stated that they faced higher out-of-pocket costs related to their illness.
Although most medical costs in Germany are covered by a person’s health insurance, patients do have to contribute co-payments for prescription drugs. Cancer patients may additionally face travel expenses to get to the hospital or medical center, as well as potentially having to pay for care, housekeeping or childcare. For over three-quarters of the patients who responded to the survey, disease-related out-of-pocket costs amounted to less than 200 euros monthly.
Cancer-related income loss was reported by 37.2% of survey participants. “In our study, this effect was more serious than out-of-pocket costs, as the suffered losses exceeded 800 euros per month in almost half of cases. They were mainly due to patients being unable to work or forced to reduce their working hours,” said Mehlis.
The analysis further showed that high financial loss relative to income was significantly associated with a lower estimation of patients’ quality of life and more distress. “The financial impacts that a majority of these patients experienced seem to have contributed to the burden of their disease: the bigger the loss was in proportion to their previous income level, the more negatively they rated their personal situation,” Winkler observed.
“More research is needed to determine what actions are necessary at the system level – for example, an extension of the period of eligibility for sickness benefits – or at the individual level, like targeted consulting and support services,” she said. “To do this, we will need a valid instrument to measure ‘subjective financial burden’ in the German context, based on a precise definition of the concept.”
Dr. Dirk Arnold of Asklepios Tumorzentrum in Hamburg, Germany, commented for ESMO: “There have been efforts in Germany, including by national entities like the Federal Joint Committee and the Robert Koch Institute, to look at the costs of oncology treatment for cancer patients – but they have focused only on drug and procedure-related expenses. With this new study, we can see not just that the financial implications of a cancer diagnosis are much broader, but also that the monetary losses associated with this disease have significant psychosocial consequences.”“We should draw lessons from these findings: just as cancer patients receive consultations about lifestyle issues, like nutrition, so too should the financial aspect somehow be integrated into the social counseling programmes we offer them,” Arnold continued. “The fact that medical expenses for patients in Germany – and Europe more generally – are relatively low compared to other parts of the world, should not lead us to underestimate the importance of their perceived financial burden and leave them alone with it. Going forward, it would be interesting to see if assessments of this burden in other European countries produce similar results.”
Arnold added: “Alleviating the financial burden of cancer: is one of ESMO’s key commitments: earlier this year, ESMO issued a paper on this subject in the context of the implementation of the 2017 World Health Assembly Resolution on Cancer prevention and control.”
This paper is the first to articulate the response and commitment oncologists to advance global cancer control through the framework of the 2017 WHA Cancer Resolution and universal health coverage. It addresses key topics like cancer prevention, timely access to treatment and care, palliative and survivorship care, as well as comprehensive data collection through robust cancer registries. The authors also offer a concrete set of actions and policy recommendations for improving patient care.
ESMO’s commitment to lessening the burden of cancer is not new: sustainable cancer care is one of the three pillars of the Society’s 2020 Vision, and various initiatives have been launched in this field over the years. Among other things, ESMO contributed in 2016 to the revision of the WHO Model List of Essential Medicines – the list of vital medicines that should be available to patients everywhere for free or at affordable prices – and added 16 anti-cancer drugs including targeted therapies. With the introduction of its own classification tool, the ESMO Magnitude of Clinical Benefit Scale, the Society provided a standardized, evidence-based approach to evaluating cancer medicines, thus helping to guide health systems in their decision-making and resource allocation. In collaboration with the Economist Intelligence Unit (EIU), ESMO also published in 2017 a report on the shortage of inexpensive cancer medicines in Europe, raising awareness for a critical issue that has immediate consequences for patient care and treatment outcomes.
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