Multiple Myeloma Patient Experience with Financial Toxicity: Findings from the Cancer Experience Registry

Background: The US prevalence of multiple myeloma (MM) is estimated at 83,118 as of January 1, 2011(SEER, 2014), and about 24,050 new MM cases will be diagnosed in 2014 (ACS, 2014). With advances in treatment, MM patients are living longer and are confronted with increasingly complex therapeutic decisions. Many people living with MM may have to manage a significant financial burden related to care, including medication copays and coinsurance, and other out of pocket costs. Financial toxicity can reduce quality of life and impede delivery of quality care. With the movement towards value-based cancer care, oncologists are encouraged to discuss costs with patients when considering treatment choices. We aimed to describe financial distress among MM patients and patient-provider communication about cost.

Methods: From July 2013-2014, the Cancer Support Community (CSC) registered 495 MM patients to the “Cancer Experience Registry: MM,” an online initiative to study and raise awareness about MM’s psychosocial impact. Registrants were recruited through an outreach program including the CSC and The Leukemia & Lymphoma Society networks of communities and resources. 266 US-based registrants completed surveys including questions about the financial cost of MM and cancer-related distress. Stress-related intrusive ideation about managing the financial impact of MM was measured using the validated 7-item Impact of Event Scale (IES); levels >13 were used to indicate clinically significant symptoms associated with anxiety. Twenty-seven items from a validated distress screener (α=0.94) (CancerSupportSource, Miller 2014) were summed to create a score for overall distress (mean=33, SD=21, range 0-103), and 4 items were summed for a depression score (α=0.83) with a binary variable created to indicate at risk for depression (score≥5).

Results: The sample (n=266) was 52% female, 91% Caucasian, median age 64. Median time since MM diagnosis was 4.5 years. Total annual income: 35% <$40K; 35% $40-79K; 30% at least $80K. 73% reported spending at least $100/mo on all out of pocket costs related to MM; nearly half (48%) spent $250 or more; and 22% spent $500 or more. Because of the medical costs of MM, 32% reported depleting their savings; 22% borrowed against or used money from retirement; and 35% reported cutting their grocery expenses. About one-third used pharmaceutical assistance programs (35%). In order to reduce health care costs, only 5% reported skipping dosages of medicine at least sometimes, and 6% postponed filling prescriptions. Seventeen percent reported they postponed seeking psychological counseling or support. Just over half (56%) reported a member of their health care team talked to them about resources related to getting financial help or financial counseling, and only 28% reported their health care team ever discussed the impact of MM on personal finances. Yet, 82% reported financial counseling would be ‘quite a bit’ or ‘very much’ helpful to someone with MM. A large proportion of participants reported they would be ‘quite a bit’ or ‘very much’ willing to receive financial assistance for medications (81%) and cost of treatment (77%), and, to a lesser extent, for transportation costs (55%) and living expenses (46%). There was a significant linear increase in overall distress (p=0.009) and risk for depression (p=0.010) with greater monthly increment in out of pocket costs, adjusting for income, until monthly out of pocket costs exceeded $1000. Nearly one-third (32%) reported currently experiencing clinically high levels of intrusive ideation (IES>13) about the financial cost of care. Similarly, 33% reported they were often or always upset about money and the cost of care, and 47% were moderately, seriously or very seriously concerned about health insurance or money worries.

Conclusion: MM places a financial burden on patients that can significantly impact quality of life and may negatively affect treatment outcomes. Implications for future research and practice include the development and evaluation of interventions to enhance doctor-patient communication and support (e.g., financial counseling and assistance) to help ensure that the financial burden of MM does not negatively impact the patient’s quality of life, course of cancer care, and health outcomes.