The cost of cancer care is growing at a rapid pace, especially the cost for the new cancer drugs, and these costs are creating a substantial burden for patients (Chino, 2016). Patients with cancer generally must bear some of the financial costs of cancer treatment, which may include significant out-of-pocket expenses for copays, deductibles, and non-covered services like transportation and housing, as well as loss of income for those who cannot work during treatment (de Souza, 2016). According to the National Comprehensive Cancer Network (NCCN), approximately one-third of cancer patients experience “significant distress” which can impact not only how the patient copes with the disease, but also their strength and ability to fight the disease and follow the recommended course of treatment (NCCN, 2017). Meisenberg (2015) reported that 47% of surveyed cancer patients reported significant or extreme levels of financial distress, and 38% experienced one or more financial hardships as a direct result of their cancer treatment.
More than half of all newly prescribed cancer treatments approved by the U.S. Food and Drug Administration are currently in oral form (Marshall, 2018). Oral therapies are much more convenient and are preferred by patients over infused drugs, but responsibility for correct administration is transferred to the patients and their caregivers, without the benefit of direct supervision by oncology professionals (Marshall, 2018). This represents a significant shift in some of the accountability for the outcomes of treatment, from the doctor to the patient (May, 2014). As patients experience these new demands to self-administer a growing proportion of their treatment, this can add significant stress to the patient (May, 2014). The ability to appropriately self-manage complex treatment plans is a concern to medical oncologists, as a patient’s response to therapy and their overall clinical outcome is highly dependent upon the patient’s correctly following their prescribed treatment regimen.
Carl May (2014) described this shifting of responsibilities to the patient as a “Burden of Treatment,” which is added to the burden of the disease itself, potentially overwhelming patients with distress. As the burdens of a cancer diagnosis accumulate, they can impact a patient’s ability to appropriately self-manage their treatments and may result in poorer health outcomes for individual patients, and increasing strain on their caregivers (May, 2014). As a long time oncology administrator, I have seen firsthand how increasing levels of financial burden has impacted patients’ ability to comply with their prescribed treatment plans, especially adherence to self-administered, oral medication therapies.
The combination of the direct financial challenges of paying for cancer treatment, and the more subjective emotional stresses that financial worries create, have been broadly termed “financial toxicity.” Financial toxicity includes the unintended financial consequences and distresses of medical treatment, reflecting a patient’s total financial burden from the disease (Gilligan, 2018). This financial burden has been associated with reduced Health-Related Quality of Life (HRQOL), increased overall symptom burden, non-adherence to treatment, and poorer overall survival, especially within underserved and socioeconomically disadvantaged populations (de Souza, 2016).
Medication adherence as a health outcome, is defined as the degree to which a patient accurately complies with the treatment recommendations of his or her provider with respect to the timing, dosage, and frequency of medication administration (Cramer, 2009). As reported in an article by Daniel Geynisman (2013), medication adherence has been a serious concern for the management of other chronic diseases including diabetes, hypertension, heart disease, asthma, and HIV/AIDS. DiMatteo (2004) reported a meta-analysis study across all diseases, that the costs of non-adherence to self-administered medications may be as high as $300 billion per year to the US healthcare system. Michael Sokol (2005) affirmed that good medication adherence is associated with a reduction in healthcare costs.
The literature demonstrates a relationship between financial toxicity and a patient’s adherence to their self-managed oral medications. What has not been made clear in the literature is whether the increasing financial burden is a primary factor in reducing oral adherence, or whether financial burden is simply one additional factor that adds to the overall burden of treatment, which as a whole, reduces oral adherence. In a series of The Kinetix Group Oncology Insights Blog postings, we will dig into this issue more deeply. In the next blog posting on this subject, I will scan the literature to provide insights into the role that a rising financial burden may play in overall medication adherence.
About the Author: Warren Smedley, MSHA, MSHQS, is a Vice President with The Kinetix Group. A long-time oncology administrator, his expertise is in oncology administration, strategy, and care transformation. His doctoral studies are in the adoption and diffusion of new hematology oncology drugs, healthcare marketing, outcomes research, and being a catalyst for healthcare policy that supports the quadruple aim.
Chino, Peppercorn, Rushing, Samsa, Nicolla, Altomare, & Zafar. (2016). “Going for Broke”: Out-of-Pocket Costs, Financial Distress, and Patient-Reported Willingness to Pay and Sacrifice in Cancer Care. International Journal of Radiation Oncology, Biology, Physics, 96(2), S135-S136.
Cramer, J. (2009). Methodological approach to the definition of “non-adherence”. Epilepsy and Behavior, 15(2), 264.
de Souza, J. A., Yap, B. J., Wroblewski, K., Blinder, V., Araújo, F. S., Hlubocky, F. J., . . . Cella, D. (2016). Measuring financial toxicity as a clinically relevant patient-reported outcome: The validation of the Comprehensive Score for financial Toxicity (COST). Cancer, 123(3), 476-484. doi:10.1002/cncr.30369
DiMatteo, M. R. (2004). Variations in Patients’ Adherence to Medical Recommendations: A Quantitative Review of 50 Years of Research. Medical Care, 42(3), 200-209.
Gilligan, Alberts, Roe, & Skrepnek. (2018). Death or Debt? National Estimates of Financial Toxicity in Persons with Newly-Diagnosed Cancer. The American Journal of Medicine, 131(10), 1187-1199.e5.
Geynisman, D. M., & Wickersham, K. E. (2013). Adherence to Targeted Oral Anticancer Medications. Retrieved from http://www.discoverymedicine.com/Daniel-M-Geynisman/2013/04/25/adherence-to-targeted-oral-anticancer-medications/
Marshall, V. K., Vachon, E. A., Given, B. A., & Lehto, R. H. (2018). Impact of Oral Anticancer Medication From a Family Caregiver Perspective. Oncology Nursing Forum 2018, 45(5), 597-606 DOI: 10.1188/18.ONF.597-606
May, Carl, Eton, David, Boehmer, Kasey, Gallacher, Katie, Hunt, Katherine, Macdonald, Sara, . . . Shippee, Nathan. (2014). Rethinking the patient: Using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Services Research, 14(1), 281.
Meisenberg, B. (2015). The financial burden of cancer patients: Time to stop averting our eyes. Supportive Care in Cancer, 23(5), 1201-1203.
National Comprehensive Cancer Network. (2017). Retrieved from https://www.nccn.org/patients/resources/life_with_cancer/distress.aspx
Sokol, McGuigan, Verbrugge, & Epstein. (2005). Impact of Medication Adherence on Hospitalization Risk and Healthcare Cost. Medical Care, 43(6), 521-530.