ASCO Connection

July 2017

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MS. FULD NASSO Patient Advocate Perspective ENGAGE IN TREATMENT PLANNING TO BETTER REFLECT PATIENT VALUES Patient engagement in treatment deci- sion making can reduce financial toxicity for patients by ensuring that treatments truly match the needs, values, and pref- erences of patients. A consideration of all clinically meaningful treatment options and their benefits, risks, and out-of-pocket costs should frame the patient decision-making process. At an individual level, patients can play a role by being active participants in decisions about their care, research- ing their insurance coverage, initiating discussions about the cost of care with their care team, advocating for coverage of the care that they need, and seeking financial assistance from foundations and company-sponsored assistance pro- grams. Empowered patients and family members know that they must advocate on their own behalf, or on behalf of their loved ones, in all aspects of their care, including financial considerations. Of course, not all patients are prepared and knowledgeable about health insurance, and many patients feel overwhelmed by the amount of information they must process about their diagnosis and treat- ment options, not to mention the ques- tion of how they will pay for their care. Patients need assistance with health insurance literacy; there is evidence that patients do not have a thorough understanding of key insurance con- structs, like deductibles, copayments, and coinsurance. 9 Ideally, patients and caregivers will raise the topic, ask the questions, and seek assistance from their care team and/or a financial counselor. However, a huge bar- rier for patients is embarrassment about discussions of financial considerations with their care team. It is essential that providers create a welcoming and open environment for patients to express their concerns. Providers should recognize how difficult it is for patients to raise the topic and should open the door to the conversation by asking a question as simple as "Do you have concerns about the cost of your treatment?" At a practice and policy level, the comprehensive treatment planning process that has been defined by the Institute of Medicine 10 —a definition arrived at with substantial input from oncologists and patients—should be the standard for doctor-patient com- munication about cancer care. It is important to note that this planning is not about checking a box that a piece of paper was handed to a patient; it is about truly engaging patients in deci- sion making about their care. This plan should include information related to diagnosis, prognosis, treatment goals, expected response to treatment, treat- ment benefits and harms, out-of-pock- et cost of care, and a plan for meeting psychosocial needs. The care planning process also should include consid- eration of advance care planning and advance directives and should lead to the development of a survivorship plan after treatment. This cancer care plan- ning process should produce a patient- specific care plan that will guide treatment decisions and facilitate care coordination, including effective symp- tom management to reduce the burden and cost of adverse effects. An important component of the plan- ning process is a discussion of the out-of-pocket costs to a patient. We know that some patients do not wish to discuss costs; they might worry about the perception that the oncolo- gist has of them, they might want the best treatment regardless of cost, or they might fear that a discussion of cost will result in inferior treatments. 11 Yet, most patients do want to have this conversation, even if they are reluctant to bring it up. Research shows that having the discussion, even without a change in treatment, can reduce costs for patients. 11 Patients are concerned about their total financial responsibility across the life of their treatment, not just the cost of one aspect of treatment. Obviously, that is difficult for one provider to share, given the multidimensional aspects of treatment. To the degree that it is pos- sible, knowledge about the total costs will help patients plan and understand the entire picture, not just the cost of a specific drug. Although some of the value frameworks, including those by ASCO, have considered the price of a drug, the out-of-pocket cost is what is most important to an individual to make decisions. In most cases, that distinction will require an understanding of the out- of-pocket maximum. It also is important for patients to understand whether any out-of-network services, which do not contribute to the out-of-pocket maxi- mum, will be required. • References 1. Kaiser Family Foundation. kff.org/health- costs/report/2016-employer-health-bene- fits-survey. Accessed October 16, 2016. 2. Davidoff AJ, Erten M, Shaffer T, et al. Can- cer. 2013;119:1257-65. 3. Cohen RA, Gindi RM, Kirzinger WK. cdc.gov/nchs/data/nhis/health_insur- ance/financial_burden_of_medical_ care_032012.pdf. Accessed March 26, 2017. 4. Zafar SY, Peppercorn JM, Schrag D, et al. Oncologist. 2013;18:381-90. 5. Ramsey S, Blough D, Kirchhoff A, et al. Health Aff (Millwood). 2013;32:1143-52. 6. Fendrick AM, Buxbaum J, Westrich K. vbid- center.org/wp-content/uploads/2014/10/ vbid-specialty-medications-npc2014-final- web.pdf. Accessed March 8, 2017. 7. Thatcher N, Hirsch FR, Luft AV, et al. Lan- cet Oncol. 2015;16:763-774. 8. Salas-Vega S, Iliopoulos O, Mossialos E. JAMA Oncol. 2017;3:382-390. 9. Zafar SY, Tulsky JA, Abernethy AP. Oncol- ogy (Williston Park). 2014;28:479-480. 10. Institute of Medicine. nap.edu/catalog. php?record_id=18359. Accessed January 9, 2014. 11. Zafar SY, Chino F, Ubel PA, et al. Am J Manag Care. 2015;21:607-15. ASCOconnection.org I 27

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