AUTHORS: Margaret I Fitch RN PhD, Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada
Christopher J Longo PhD, Health Policy and Management, DeGroote School of Business, MacMaster University, Hamilton, Canada
Cancer and its treatments have many impacts and leave individuals and families coping with a range of challenges. One of the challenges we are understanding more about is financial toxicity. The term reflects both hardship and distress arising from the financial burden experienced during and following cancer treatment.
Initially, exploration of financial impact following a cancer diagnosis only focused on calculating costs of treatments. Investigations then moved on to explore the amount of ‘out-of-pocket’ costs which patients incurred. These are defined as expenses not covered by the healthcare system or reimbursed through health insurance. They can include costs for hospital bills, medications, supplies, counselling, transportation, and parking. These objective measures failed to capture the extent and complexity of the financial impact. More recently, subjective measures concerning distress and impact on quality of living have been explored.
Almost all people diagnosed with cancer will report having added expenses. Cancer patients/survivors report there are often “out-of-pocket” expenses they must pay themselves related to having cancer and being treated. The actual amounts vary from country to country but exist regardless of the type of healthcare system coverage in a country (i.e., public, private. combination).
Many individuals also report a loss of income which they attribute to cancer. Many who are working at the time of diagnosis report not being able to work for a time. This can also apply to family members. Some individuals will be covered by work leave or sick coverage plans, but this will vary from person to person. Those who are self-employed often face significant challenges if they are unable to work, as do those in fixed incomes. Additionally, whether an individual has private insurance coverage will influence the amount of income lost.
Patients use a variety of strategies to deal with the financial demands: using savings, reducing spending, forgoing leisure activities, or setting aside plans for items such as vacations, education, and home renovations. In some instances, they forgo medical care or medications.
The emotional distress engendered by financial burden varies from person to person. The extent of this strain is linked to such factors as financial status at the time of diagnosis, financial acumen, having insurance coverage, and ability to access financial support programs.
It is important that a conversation occur soon after diagnosis about the potential for financial burden. Patients need to be prepared for the financial impact and not taken by surprise. They need to know what resources are available to them. Some will have sufficient resources of their own and be able to manage without additional intervention, but others will benefit from additional assistance. The role of financial navigators has been implemented successfully in some cancer programs.
Screening for distress surrounding financial toxicity should be incorporated into routine practice. Often the financial impact emerges during treatment and may continue long after treatment has finished. It is important to identify those who would benefit from intervention as early as possible so that effects can be mitigated.
- Fitch MI, Sharp L, Hanly P, Longo CJ. Experiencing financial toxicity associated with cancer in publicly funded healthcare systems: A systematic review of qualitative studies [e-pub ahead of print]. J Cancer Surviv. doi: https://doi.org/10.1007/s11764-021-01025-7.
- Fitch MI, Longo CJ, Chan RJ. Cancer patients’ perspectives on financial burden in a universal healthcare system: analysis of qualitative data from participants from 20 provincial cancer centres in Canada. Patient Educ Counsel. 2021;104:903–910. https://doi.org/10.1016/j. pec.2020.08.013.
- Longo CJ. Linking Intermediate to Final “Real-World” Outcomes: Is Financial Toxicity a Reliable Predictor of Poorer Outcomes in Cancer? Curr Oncol. 2022; 29: 2483–2489. https://doi.org/10.3390/curroncol29040202
- Longo CJ, Fitch MI, Banfield L, Hanly P, Yabroff KR, Sharp L. Financial toxicity associated with a cancer diagnosis in publicly funded healthcare countries: a systematic review. Support Care Cancer. 2020;28(10):4645–65. https://doi.org/10.1007/s00520-020-05620-9 Epub 2020 Jul 11 32653957.
This study was presented at ICCN2022 virtual conference.
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