“Financial toxicity” (FT) describes both the objective financial burden and subjective financial distress from a cancer diagnosis and its treatment.1,2 Up to 48% of cancer survivors report experiencing financial burden due to direct (eg, out-of-pocket expenses) and indirect (eg, loss of income) costs.3 Financial toxicity exists in all health systems including user-pay, universal, and hybrid settings.3,4 Depending on a patient's individual circumstances, cancer diagnosis and treatments, and coping strategies,3 this burden may cause significant financial distress, reduced adherence with treatment, and delayed or forgone treatment, which lead to poorer health outcomes.2,3,5 Our systematic review showed a 3-fold increased risk of depression and anxiety in cancer survivors experiencing FT.6 Individuals living in the most socioeconomically disadvantaged areas are at a greater risk of FT related to cancer care.7
In a previous editorial published in Cancer Nursing,8 we called for actions to investigate the role of oncology nurses in assessing and addressing FT in patients across the cancer care trajectory. For the past several years, there has been a shift of focus from acknowledging FT as a problem to identifying strategies to addressing the impacts of FT at the system, institutional, and individual (ie, clinician and patient) levels.9 For example, at the system level, government support to reduce the costs of available treatments, and efforts for discouraging low-value interventions (eg, the American Society of Clinical Oncology value framework and the European Society of Medical Oncology Magnitude of Clinical Benefit Scale)10 and ensuring informed financial consent11 have been helpful. At the institutional and individual levels, reducing low-value interventions, facilitating appropriate referrals for financial discussions, and ensuring full disclosure of information on the costs of interventions have been proposed. Clinicians also have a role in discussing goals, benefits, costs of cancer treatment, and potential financial burden and distress, as well as managing subsequent impacts of such distress.10 As with any toxicity, not every patient shares the same level of risk.12 For example, our recent work12 has demonstrated that women with breast cancer had distinct risk profiles for developing FT. Moreover, those who develop FT may experience different levels of severity.12 Therefore, we argue that both the risk of development and the severity of FT should be screened for, assessed, and managed in a timely manner with available resources and programs at a clinical level.
Over recent years, the use of patient-reported outcome measures (PROMs) has gained momentum in routine cancer care.13 Screening using PROMs is a patient-centered approach that enhances communication and care coordination and, in some circumstances, increases survival.14,15 However, finance-related outcomes are currently only a minor component of generic PROM tools (if included at all). Most PROM tools understandably focus on clinical and health outcomes, and their brevity limits the inclusion of validated FT measures (eg, COST-FACIT16 and other objective measures). Leveraging the successes of PROMs in cancer care, we propose the use of finance-related outcome measures (FROMs), specifically in the financial health context as a natural extension of PROMs. However, unlike the frequent nature of PROM collection during cancer treatment, we propose that robust and validated FROMs could be collected less often, perhaps at diagnosis and key transition phases (eg, midway through treatment, end of treatment, and infrequently during survivorship follow-up). Patients with a lower risk of developing FT might require less frequent collection of FROMs. However, further research is required to determine optimal data collection frequency to enable clinical actionability.
We propose 3 key benefits for the routine collection of FROMs in cancer care. First, early identification of FT or patients at a high risk of developing FT using FROMs can prompt timely clinical actions before problems escalate and can prioritize financial discussions and referrals for counseling and navigation programs, where available, as well as manage the impacts of distress resulting from FT. Second, FROMs can allow widescale monitoring of FT across patient groups and jurisdictions, highlighting groups with the most pressing needs for system interventions and advocacy agenda. Third, the routine use of FROMs will enable research that can clarify the links between FT and patient outcomes, informing future interventions to improve outcomes. We recommend that the cancer care community codesign FROMs with consumers and relevant end users, and test and evaluate their use, feasibility, value, and sustainability to benefit both patients with cancer and their families.
Our very best,
Raymond Javan Chan, PhD, MAppSc(Research), BN, RN
Louisa G. Gordon, PhD, MPH, BEcon
Metro South Hospital and Health Service, Princess Alexandra Hospital (Dr Chan); School of Nursing and Cancer and Palliative Care Outcomes Centre, Queensland University of Technology (Drs Chan and Gordon); QIMR Berghofer Medical Research Institute (Dr Gordon); and School of Public Health The University of Queensland (Dr Gordon), Brisbane, Australia
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. Sydney, Australia: Cancer Council Australia; 2020.
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