Reporting and Grading Financial Toxicity

DOI: 10. 1200/JCO. 2014. 57. 8740 In my hematology-oncology practice, I often see the worry and burden of financial concerns when patients share their stories with me, looking for comfort or tangible help investigating their financial options. I imagine other patients whisper to their families and friends instead, not wanting to influence my treatment recommendations by injecting such considerations into the discussion. I suspect I ought to ask all patients about financial vulnerabilities. After all, shouldn’t it be part of my full review of symptoms? Maybe it is not quite in the same league as shortness of breath, fevers, new neurologic symptoms, or fatigue. Or is it? Ms R is a 59-year-old woman diagnosed with a second primary breast cancer with axillary lymph node involvement 3 years ago. She had a bilateral mastectomy followed by adjuvant chemotherapy and radiation and at least three lines of endocrine therapy and chemotherapy for repeated local recurrences. Currently she is being treated with everolimus and exemestane. Her out-of-pocket expenses (from deductibles and copayments for office visits and prescriptions) have been increasing exponentially since her diagnosis to the point where she has spent close to 40, 000 in the last 3 years for her medical care. She lost her job during treatment and has needed to withdraw money from her retirement account to pay for medical care, which has added extreme emotional stress to the physical stress of her cancer and its treatment. She worries about how she will pay for medical care once she exhausts her retirement funds. Her questions are difficult and thought provoking: “Will I have to sell my home? Should I declare bankruptcy? Do I need to stop spending money on food and utilities to be able to pay for medical care? Will I have to go to hospice when I am unable to pay any more? Does hospice charge very much? ” These questions make me uncomfortable and aware of the fact that I am not really prepared to manage this adverse effect of cancer treatment. Thirty-eight-year-old Mr M and his wife found themselves in a similar situation 8 months after his allogeneic transplant for acute myeloid leukemia. They depleted their savings to cover medical bills, child care for their two young children, and out-ofpocket expenses from traveling back and forth to the transplant center. Their fiscal distress was amplified when his wife—his primary caregiver—lost her job. They were forced to sell their home and move into a rental apartment. The final blow came with the loss of his employer-funded insurance around the time he relapsed. Mr M’s desire to avoid spending all their resources and leaving his wife and children bereft clearly had an impact on his decision to stop anticancer treatment. It was clear to me that financial distress added to the family’s anguish during the final days of Mr M’s life. Stories like Ms R and Mr M’s illustrate the concept of financial toxicity, defined as adverse economic consequences resulting from medical treatment. Similar to medical toxicity, financial toxicity can result in treatment nonadherence and lifestyle changes for patients, which then impact quality of life and increase the morbidity and mortality of treatments. Similar to medical toxicity, financial toxicity can have different degrees of severity and can progress if the treatment approach is not adjusted or if appropriate supportive measures are not initiated in a timely manner. It is easy to think that the Affordable Care Act holds the key to solving the problem of financial toxicity through its provisions that help limit the financial burden of medical care. Unfortunately, it may have the unintended consequence of actually increasing the financial toxicity by causing expansion of high-deductible health plans. In addition, if an insurance plan purchased through a health care exchange does not cover care at a major cancer center, the patient may be faced with high out-of-pocket costs that will not be part of the annual limitation on cost-sharing. Ubel et al have advocated full disclosure of financial considerations when discussing benefits and risks of different treatments. This seems consistent with the current practice of informing patients about the physical risks of anticancer treatment such as nausea, hair loss, and neuropathy. Could a standardized scoring system for financial toxicity be beneficial? For example, the Common Terminology Criteria for Adverse Events used during evaluation of new clinical agents/treatments provides a graduated, standardized nomenclature. The system grades conditions as mild (grade 1), moderate (grade 2), severe (grade 3), life-threatening or disabling (grade 4), or fatal (grade 5). A prototype for such a grading scale for financial toxicity is presented JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 32 NUMBER 29 OCTOBER 1