Financial Toxicity and Cost-Management Behaviors Among Patients with Myelodysplastic Syndromes

Background: Financial toxicity (FT) refers to the objective monetary burden and subjective psychological distress that cancer patients face as a result of their care. Prior research indicates that myelodysplastic syndromes (MDS) are particularly costly, with patients facing an estimated burden of nearly $130,000 in the first two years following diagnosis. We sought to better understand the degree to which MDS patients report FT, finance-related worries and behaviors, and cost-related medication scrimping.

Methods: In this observational, cross-sectional study, 112 MDS patients completed the Cancer Support Community's online survey, the Cancer Experience Registry®, between October 2021 and June 2022. Participants provided sociodemographic and clinical history information and completed the 11-item COmprehensive Score for financial Toxicity (COST), a validated patient reported outcome measure with scores ranging from 0 to 44 (lower indicating worse financial well-being). Participants also answered questions regarding finance-related worries and behaviors and cost-related medication scrimping. Frequencies and descriptive statistics were examined.

Results: The MDS sample population was 55% female and 88% Non-Hispanic White with a mean age 70 years (SD=11.0; range 34-93). 68% had a college degree, 11% were employed, and 20% reported a gross annual household income <$40k. Mean time since diagnosis was 3.8 years (SD=5.2; Median=2.0 years). 54% were currently in treatment. 22% had received an allogeneic stem cell transplant, and 3% expected to receive a transplant in the future. 17% reported a WHO subtype of MDS-EB, 16% MDS-MLD, 12% MDS-RS, 11% MDS with isolated del, 5% MDS-SLD, and 5% MDS-U, while 33% did not know. 8% reported an IPSS-R score of very low risk, 45% low risk, 17% intermediate risk, 5% high risk, and 5% very high risk, while 19% did not know. The mean COST score was 28.9 (SD=10.5). 58% of respondents reported no financial toxicity (COST score >26), 23% reported mild financial toxicity (scores ≥14-26), 8% reported moderate financial toxicity (scores >0-14), and 1% reported severe financial toxicity (score = 0). The frequency of individual COST items showed 41% (somewhat, quite a bit, or very much) worried about future financial problems due to treatment costs, 41% felt they had no choice about the amount of money spent on treatment costs, and 41% felt frustrated that they could not work or contribute as usual. 28% reported that they did not at all have enough money in savings, retirement, or assets to cover the costs of treatment. Additionally, 13% of respondents indicated that they were moderately to severely concerned about health insurance or money worries. Of the 100 respondents who answered questions related to financial impacts of their cancer treatment, 10% used up/depleted their savings, 20% used retirement funds, 6% sold or liquidated other assets, 11% borrowed money/went into debt, 1% filed for bankruptcy, 28% utilized co-pay cards (e.g., pharmacy cards) and 17% received cash gifts or gift cards from others. 6% of participants indicated that in the past 12 months, there were times when they needed some kind of prescription medication but did not get it because of the cost. Of the 51 respondents who took prescription medication for their cancer in the past 12 months, 10% reported that they skipped medication doses, took less medication, or delayed filling a prescription to save money.

Conclusions: Over 40% of MDS respondents to this survey experienced significant worries, frustrations, and fears related to the cost of their treatment, including 9% noting moderate/severe FT. Additionally, patients engaged in a variety of strategies to mitigate their financial burden, including tapping into personal assets (including >10% depleting savings and >10% borrowing money) and scrimping on prescription medication. Future research should examine how maladaptive coping with FT impacts patient outcomes. The MDS healthcare team should perform timely conversations about the cost and value of MDS treatments, periodic assessments of FT, and offer access to financial and work-related resources.

Miller:GlaxoSmithKline: Research Funding; Genentech: Research Funding; Bristol Myers Squibb: Research Funding; Astellas Pharma: Research Funding; BeiGene: Research Funding; Takeda Oncology: Research Funding; Merck & Co.: Research Funding; Pfizer Oncology: Research Funding; Janssen: Research Funding; Novartis: Research Funding. Fortune:AbbVie: Research Funding; Amgen Oncology: Research Funding; AstraZeneca: Research Funding; Astellas Pharma: Research Funding; Genentech: Research Funding; Gilead Sciences: Research Funding; Lilly Oncology: Research Funding; Merck & Co, Inc: Research Funding; Sumimoto Dainippon Pharma Co: Research Funding; Bristol Myers Squibb: Research Funding; Takeda Oncology: Research Funding. Goldberg:MDS Foundation: Membership on an entity's Board of Directors or advisory committees; Novartis: Consultancy; COTA Healthcare: Current equity holder in private company, Current holder of stock options in a privately-held company.