Abstract
Over the past decade, the financial burden of cancer care on patients and their families has garnered increased attention. Many of the potential solutions have focused on system-level interventions such as adopting value-based payment models and negotiating drug prices; less consideration has been given to actions at the patient level to address cancer care costs. We argue that it is imperative to develop and support patient-level strategies that engage patients and consider their preferences, values and individual circumstances. Opportunities to meet these aims and improve the economic experience of patients in oncology are discussed, including: shared decision-making and communication, financial navigation and treatment planning, digital technology and alternative care pathways, and value-based insurance design.
Lay abstract
The financial burden of cancer care on patients and their families is a growing problem and action is critically needed to alleviate the high costs of such care. So far, potential solutions have focused on system-level interventions, with less consideration given to solutions at the patient level. This review argues that it is imperative to develop and support patient-level strategies that engage patients. Next, the review presents evidence of the interplay between patient preferences and values and the costs of cancer care. Finally, opportunities to enhance engagement and improve the economic experience of patients in oncology are discussed, including: shared decision-making and communication, financial navigation and treatment planning, digital technology and alternative care pathways, and value-based insurance design.
Papers of special note have been highlighted as: • of interest; •• of considerable interest
References
- 1. . Cancer statistics, 2020. CA Cancer J. Clin. 70(1), 7–30 (2020).
- 2. American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2019–2021. GA, USA (2019). https://www.cancer.org/research/cancer-facts-statistics/survivor-facts-figures.html
- 3. . Health care expenditure burden of cancer care in the United States. Inquiry 56, 46958019880696 (2019).
- 4. . Medical care costs associated with cancer survivorship in the United States. Cancer Epidemiol. Biomarkers Prev. 29(7), 1304–1312 (2020).
- 5. The patient-level effect of the cost of cancer care – financial burden in German cancer patients. BMC Cancer 20(1), 529 (2020).
- 6. . Geographical disparities in treatment and health care costs for end-of-life cancer patients in China: a retrospective study. BMC Cancer 19(1), 39 (2019).
- 7. Financial toxicity: a potential side effect of prostate cancer treatment among Australian men. Eur. J. Cancer Care 26(1), e12392 (2017).
- 8. . Economics of cancer care: a community-based cross-sectional study in Kerala, India. South Asian J. Cancer 09(1), 7–12 (2020).
- 9. American Society of Clinical Oncology guidance statement: the cost of cancer care. J. Clin. Oncol. 27(23), 3868–3874 (2009).
- 10. . Low-value practices in oncology contributing to financial toxicity. Ecancermedicalscience 11, 727 (2017). • Review article that summarizes the pathway between low-value cancer care and financial toxicity, highlighting specific examples in oncology.
- 11. . Price of cancer care and its tax on quality of life. J. Oncol. Pract. 14(2), 69–71 (2018).
- 12. . Financial toxicity in cancer care: prevalence, causes, consequences, and reduction strategies. J. Surg. Oncol. 120(1), 85–92 (2019).
- 13. . Minimizing the burden of cancer in the United States: goals for a high-performing health care system. CA Cancer J. Clin. 69(3), 166–183 (2019).
- 14. . Financial toxicity of cancer treatment: moving the discussion from acknowledgement of the problem to identifying solutions. EClinicalMedicine 20, 100269 (2020).
- 15. . Trends in the cost of cancer care: beyond drugs. J. Clin. Oncol. 38(4), 316–322 (2020).
- 16. . Financial toxicity and implications for cancer care in the era of molecular and immune therapies. Ann. Transl. Med. 6(9), 166 (2018).
- 17. . Guideline-discordant use of imaging during work-up of newly diagnosed prostate cancer. J. Oncol. Pract. 11(2), e239–246 (2015).
- 18. . The clinical impact of ASCO ‘choosing wisely’ recommendations on staging imaging for early stage breast cancers: an interrupted time-series analysis utilizing SEER-Medicare data. J. Clin. Oncol. 38(Suppl. 15), 2078–2078 (2020).
- 19. . Contralateral prophylactic mastectomy in the era of financial toxicity: an additional point for concern? Ann. Surg. 271(5), 817–818 (2020).
- 20. Financial Toxicity and Cancer Treatment (PDQ®)–Health Professional Version. National Cancer Institute (2019). https://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-hp-pdq
- 21. . Financial toxicity, part I: a new name for a growing problem. Oncology (Williston Park) 27(2), 80–81, 149 (2013).
- 22. . Full disclosure – out-of-pocket costs as side effects. N. Engl. J. Med. 369(16), 1484–1486 (2013).
- 23. Financial costs and burden related to decisions for breast cancer surgery. J. Oncol. Pract. 15(8), e666–e676 (2019).
- 24. Financial toxicity is more than costs of care: the relationship between employment and financial toxicity in long-term cancer survivors. J. Cancer Surviv. 13(1), 10–20 (2019).
- 25. Assessment of financial toxicity among older adults with advanced cancer. JAMA Netw. Open 3(12), e2025810 (2020).
- 26. . Assessment of parking fees at National Cancer Institute-designated cancer treatment centers. JAMA Oncol. 6, 1295–1297 (2020).
- 27. . Financial toxicity and employment status in cancer survivors. A systematic literature review. Support. Care Cancer 28, 5693–5708 (2020).
- 28. . Death or debt? National estimates of financial toxicity in persons with newly-diagnosed cancer. Am. J. Med. 131(10), 1187–1199 e1185 (2018).
- 29. National Cancer Institute. SEER Cancer Statistics Review, 1975-2017 (based on November 2019 SEER data submission). Bethesda, MD, USA (2020). https://seer.cancer.gov/csr/1975_2017/
- 30. Financial insolvency as a risk factor for early mortality among patients with cancer. J. Clin. Oncol. 34(9), 980–986 (2016). •• Large study that demonstrated that bankruptcy appears to be a risk factor for mortality among cancer patients.
- 31. . Financial hardships experienced by cancer survivors: a systematic review. J. Natl Cancer Inst. 109(2), djw205 (2017).
- 32. Use of an online crowdfunding platform for unmet financial obligations in cancer care. JAMA Intern. Med. 179, 1717–1720 (2019).
- 33. . Forgoing medical care because of cost: assessing disparities in healthcare access among cancer survivors living in the United States. Cancer 116(14), 3493–3504 (2010).
- 34. . Compared with other countries, women in the US are more likely than men to forgo medicines because of cost. Health Aff. (Millwood) 39(8), 1334–1342 (2020).
- 35. . Self-reported financial burden of cancer care and its effect on physical and mental health-related quality of life among US cancer survivors. Cancer 122(8), 283–289 (2016).
- 36. . Understanding financial hardship among cancer survivors in the United States: strategies for prevention and mitigation. J. Clin. Oncol. 38, 292–301 (2020).
- 37. . Relationships between social isolation, neighborhood poverty, and cancer mortality in a population-based study of US adults. PLoS ONE 12(3), e0173370 (2017).
- 38. Overview on patient centricity in cancer care. Front. Pharmacol. 8, 698 (2017).
- 39. Interventions supporting cost conversations between patients and clinicians: a systematic review. Int. J. Clin. Pract. 75(5), e14037 (2021).
- 40. Financial distress, communication, and cancer treatment decision making: does cost matter? J. Clin. Oncol. 31(Suppl. 15), 6506–6506 (2013).
- 41. . Patients’ preferences for outcome, process and cost attributes in cancer treatment: a systematic review of discrete choice experiments. Patient 10(5), 553–565 (2017).
- 42. Unmet need for clinician engagement regarding financial toxicity after diagnosis of breast cancer. Cancer 124(18), 3668–3676 (2018).
- 43. Conversations about financial issues in routine oncology practices: a multicenter study. J. Oncol. Pract. 15(8), e690–e703 (2019).
- 44. . Importance of quality-of-life priorities and preferences surrounding treatment decision making in patients with cancer and oncology clinicians. Cancer 126(15), 3534–3541 (2020). • Analysis of breast cancer patients that showed variability among patients’ preferences for affordability and functional independence when making treatment decisions.
- 45. Cancercare. Decision making at the point of care: voices of oncology providers. A Patient Values Initiative Issue Brief. Cancercare, NY, USA (2018). https://media.cancercare.org/publications/original/378-pvi_ii.pdf
- 46. . Do patient preferences align with value frameworks? A discrete-choice experiment of patients with breast cancer. MDM Policy Pract. 5(1), 2381468320928012 (2020).
- 47. Multilevel determinants of financial toxicity in breast cancer care: perspectives of healthcare professionals and Latina survivors. Support. Care Cancer 28(7), 3179–3188 (2020).
- 48. Quantifying treatment preferences and their association with financial toxicity in women with breast cancer. J. Clin. Oncol. 38(Suppl. 29), 141–141 (2020).
- 49. . Shared decision making for treatment of cancer: challenges and opportunities. J. Oncol. Pract. 10, 206–208 (2014).
- 50. . Shared decisions in cancer care: is medicare providing a model? Reform-monitoring and impact. Urban Institute (2017). https://www.urban.org/sites/default/files/publication/89901/2001242-shared_decisions_in_cancer_care_is_medicare_providing_a_model_1.pdf
- 51. Barriers and facilitators to shared decision-making in oncology: a systematic review of the literature. Support. Care Cancer 27, 1613–1637 (2019).
- 52. ‘It’s important to me’: a qualitative analysis on shared decision-making and patient preferences in older adults with early-stage breast cancer. Psychooncology 30(2), 167–175 (2021).
- 53. . Implementing and evaluating shared decision making in oncology practice. CA Cancer J. Clin. 64(6), 377–388 (2014).
- 54. . Cost information enhances shared decision making: Lessons from FAIR Health's shared decision-making initiative. (2020). https://s3.amazonaws.com/media2.fairhealth.org/brief/asset/Cost%20Information%20Enhances%20Shared%20Decision%20Making-Lessons%20from%20FAIR%20Healths%20Shared%20Decision-Making%20Initiative-A%20FAIR%20Health%20Brief.pdf
- 55. . Patient–provider discussion about cancer treatment costs and out-of-pocket spending: implications for shared decision making in cancer care. Value Health 23(12), 1592–1598 (2020). •• Evidence to support that patient–provider cost discussions are associated with lower total out-of-pocket spending.
- 56. . Patients and physicians can discuss costs of cancer treatment in the clinic. J. Oncol. Pract. 11(4), 308–312 (2015).
- 57. . The patient-perspective value framework: short-and long-term recommendations to influence value assessment methodology. Avalere Health (2019). https://avalere.com/wp-content/uploads/2019/05/20190530_PPVF-Working-Group-Paper_Final.pdf
- 58. . Incorporating patient preferences into cancer care decisions: challenges and opportunities. Cancer 126(15), 3393–3396 (2020).
- 59. A pilot study to increase adherence to ASCO Choosing Wisely recommendations for breast cancer surveillance at community clinics. J. Clin. Oncol. 38(Suppl. 29), 18–18 (2020).
- 60. Prospective study of surgical decision-making processes for contralateral prophylactic mastectomy in women with breast cancer. Ann. Surg. 263(1), 178–183 (2016).
- 61. How to welcome cost-of-care conversations in your practice cost-of-care conversations: Practice Brief #3. Avalere Health (2018). https://essentialhospitals.org/wp-content/uploads/2018/11/CostofCarePracticeBrief3.pdf
- 62. Updating the American Society of Clinical Oncology Value Framework: revisions and reflections in response to comments received. J. Clin. Oncol. 34(24), 2925–2934 (2016).
- 63. . The accuracy and usefulness of the national comprehensive cancer network evidence blocks affordability rating. Pharmacoeconomics 38(7), 737–745 (2020).
- 64. . ‘All about the money?’ A qualitative interview study examining organizational- and system-level characteristics that promote or hinder shared decision-making in cancer care in the United States. Implement Sci. 15(1), 81 (2020).
- 65. . Facilitators and barriers to implementing a patient-centered oncology care model. JCO Oncol. Pract. 16(12), e1441–e1450 (2020).
- 66. Using shared decision-making tools and patient-clinician conversations about costs. Mayo Clin. Proc. Innov. Qual. Outcomes 4(4), 416–423 (2020).
- 67. . Price transparency for whom? In search of out-of-pocket cost estimates to facilitate cost communication in cancer care. Pharmacoeconomics 36, 259–261 (2018).
- 68. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst. Rev. (10), CD001431 (2011).
- 69. Addressing health literacy in patient decision aids. BMC Med. Inform. Decis. Mak. 13(Suppl. 2), S10 (2013).
- 70. . Emerging good practices for transforming value assessment: patients’ voices, patients’ values. Value Health 21(4), 386–393 (2018).
- 71. Developing an educational intervention to address financial hardship in cancer patients. Mayo Clin. Proc. Innov. Qual. Outcomes 4(4), 424–433 (2020).
- 72. A pilot study of a comprehensive financial navigation program in patients with cancer and caregivers. J. Natl Compr. Canc. Netw. 18(10), 1366–1373 (2020).
- 73. Current practices for screening and management of financial distress at NCCN member institutions. J. Natl Compr. Canc. Netw. 18(7), 825–831 (2020).
- 74. The Association of Community Cancer Centers. Are we meeting the needs of our cancer patients? (2014). https://www.accc-cancer.org/docs/projects/financial-advocacy/fan-trends-survey-summary-2014.pdf?sfvrsn=64d8fd6c_0
- 75. The Advisory Board Company. Oncology roundtable lessons for optimizing program performance maximizing the value of patient navigation. (2011). https://www.advisory.com/Topics/Oncology/2011/03/Maximizing-the-Value-of-Patient-Navigation
- 76. Michigan Cancer Consortium. Financial navigation for people undergoing cancer treatment (2018). www.michigancancer.org/PDFs/Publications_Products/MCCExclusiveProd/FinancialNavigationReport_FinalAccessible2018.pdf.
- 77. . Engaging patients in value-based cancer care: a missed opportunity. JAMA Oncol. 4, 1479–1480 (2018).
- 78. . Characterizing health plan price estimator tools: findings from a national survey. Am. J. Manag. Care 22(2), 126–131 (2016).
- 79. . Who uses a price transparency tool? Implications for increasing consumer engagement. Inquiry 54, 46958017709104 (2017).
- 80. . Price transparency in health care has been disappointing, but it doesn’t have to be. JAMA 322, 1243–1244 (2019).
- 81. . Improving price transparency in cancer care. J. Oncol. Pract. 12, 44–47 (2016).
- 82. Patients’ barriers to receipt of cancer care, and factors associated with needing more assistance from a patient navigator. J. Natl Med. Assoc. 103(8), 701–710 (2011).
- 83. . Examining a health care price transparency tool: who uses it, and how they shop for care. Health Aff. (Millwood) 35(4), 662–670 (2016).
- 84. Pilot feasibility study of an oncology financial navigation program. J. Oncol. Pract. 14(2), e122–e129 (2018).
- 85. . Impact of trained oncology financial navigators on patient out-of-pocket spending. Am. J. Manag. Care 24(Suppl. 5), S74–S79 (2018).
- 86. Resource use and medicare costs during lay navigation for geriatric patients with cancer. JAMA Oncol. 3(6), 817–825 (2017).
- 87. Health care costs in the last week of life: associations with end-of-life conversations. Arch. Intern. Med. 169(5), 480–488 (2009).
- 88. . Real-world data (RWD) and patients reported outcomes (PRO) in breast cancer (BC): physical, emotional side effects (S/E), financial toxicity (FT), and complementary usage (CM) relations. J. Clin. Oncol. 37(Suppl. 15), e18060–e18060 (2019).
- 89. . Financial toxicity (FT) real-world data evidence (RWDE) in American patients (pts) receiving cancer immunotherapy drugs (IOT). J. Clin. Oncol. 38(Suppl. 15), e19331–e19331 (2020).
- 90. . Patients with cancer and social media: harness benefits, avoid drawbacks. J. Oncol. Pract. 14, 731–736 (2018).
- 91. . Social media and cancer misinformation: additional platforms to explore. Am. J. Public Health 110, S292–S293 (2020).
- 92. American Society of Clinical Oncology policy statement on clinical pathways in oncology. J. Oncol. Pract. 12(3), 261–266 (2016).
- 93. Source: Navigating Cancer Navigating Cancer’s triage software with symptom management pathways facilitates $3.4 million in annual savings. Press release: www.prweb.com/releases/2017/08/prweb14609775.htm.
- 94. . Increasing the duration and efficacy of intravenous chemotherapy using a patient-centered digital education program: Navigating Cancer’s program for patients receiving pemetrexed for lung cancer. J. Clin. Oncol. 35(Suppl. 15), e18025–e18025 (2017).
- 95. The Cancer Care Transformation Playbook opportunities to reduce unwarranted care variation in oncology. 2017). https://www.navigatingcancer.com/wp-content/uploads/2018/03/Oncology-Roundtable_Cancer-Care-Transformation-Playbook.pdf
- 96. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA 318, 197–198 (2017).
- 97. . Assessing patient preferences for the delivery of different community-based models of care using a discrete choice experiment. Health Expect. 18(5), 1204–1214 (2015).
- 98. . Systematic review of patient and caregivers' satisfaction with telehealth videoconferencing as a mode of service delivery in managing patients' health. PLoS ONE 14(8), e0221848 (2019).
- 99. . Medical oncology professionals’ perceptions of telehealth video visits. JAMA Netw. Open 4(1), e2033967 (2021). • Survey of medical oncologists that found conflicting opinions on the benefits of telehealth in cancer care.
- 100. Patient perception of telehealth services for breast and gynecologic oncology care during the COVID-19 pandemic: a single center survey-based study. J. Breast Cancer 23(5), 542–552 (2020).
- 101. Virtual care models for cancer survivorship. NPJ Digit. Med. 3, 1–7 (2020).
- 102. . The affordable care act: the value of systemic disruption. Am. J. Public Health 103, 969–972 (2013).
- 103. . New COVID-19 Rule Addresses Coverage, Medicaid Waivers | Health Affairs. Health Affairs Blog (2020). https://www.healthaffairs.org/do/10.1377/hblog20201030.291472/full/
- 104. . Value-based insurance design improves medication adherence without an increase in total health care spending. Health Aff. (Millwood) 37(7), 1057–1064 (2018).
- 105. . The effect of increased cost-sharing on low-value service use. Health Econ. 29(10), 1180–1201 (2020).
- 106. Eliminating medication copayments reduces disparities in cardiovascular care. Health Aff. (Millwood) 33(5), 863–870 (2014). • Proposes a framework for implementation of value-based insurance design in oncology.
- 107. . Value-based insurance design: aligning incentives, benefits, and evidence in oncology. J. Natl Compr. Cancer Netw. 10(1), 18–23 (2012).
- 108. Blue Cross NC launches ‘SmartShopper’ program, drives cost awareness by paying members to shop for health care. BlueCross BlueShield, NC, USA (2018). https://mediacenter.bcbsnc.com/news/blue-cross-nc-launches-smartshopper-program-drives-cost-awareness-by-paying-members-to-shop-for-health-care
- 109. . Lowering medical costs through the sharing of savings by physicians and patients: inclusive shared savings. JAMA Intern Med 174(12), 2009–2013 (2014).
- 110. . Bringing value-based insurance design to oncology: the new ‘skin in the game’. Am. J. Manag. Care 26(10), SP351 (2020).
- 111. . V-BID X: Creating A Value-Based Insurance Design Plan For The Exchange Market | Health Affairs. Health Affairs Blog (2019). https://www.healthaffairs.org/do/10.1377/hblog20190714.437267/full/