Although fully addressing the financial hardship of patients with cancer requires a complex, multifaceted approach, even small changes may ease these burdens and improve patient outcomes.
The financial burden of cancer care can decrease patient quality of life in numerous ways. Patients with cancer face not only high out-of-pocket costs, debt, and decreased income but also psychological distress, and treatment delays or even discontinuation.1 Physicians are uniquely positioned to help patients under-stand the financial ramifications of treatment.
Nevertheless, it has been difficult to establish validated measures to describe, quantify, and qualify the prevalence of financial distress associated with cancer care across all levels of care.2 Assessments from the National Cancer Institute’s Community Oncology Research Program (NCORP) and the National Comprehensive Cancer Network (NCCN) have demonstrated that despite nearly 75% of NCCN care centers nationwide having methodologies in place to assess financial toxicity, effective management protocols are not yet in place.3,4
Seventy-two percent of 221 NCORP centers have instituted a financial screening process, but only 50% of them have a cancer financial navigator on staff.4 Despite such high rates of screening, the most commonly used method for assessing financial hardship at NCORP centers was intake forms (68%), which investigators noted might highlight only insurance-related burdens.3
The results of a recent survey of patients with cancer who received treatment at ambulatory infusion centers (Mayo Clinic in Phoenix, Arizona, and Mississippi Medical Center, in Jackson) showed that 48% to 68% of them reported a financial hardship.5
The authors found that financial literacy may be integral to reducing adverse outcomes and that interventional programs are needed to increase financial literacy among patients with cancer.
“Patient-reported financial hardship from cancer treatment is a growing challenge,” Khera et al wrote in the study.5 “The field of financial hardship is now shifting toward interventions. Understanding the association between health insurance literacy and financial hardship and how financial literacy may change this association is important because these factors are potentially modifiable.”
One important tool used to determine financial literacy is the FACIT-COST assessment (Financial Toxicity—Functional Assessment of Chronic Illness Therapy Comprehensive Score), whose scores range from 0 to 44, with lower scores indicating higher burden. It includes responses like the following:
Additional assessment tools include the National Health Interview Survey and the Health Insurance Literacy Measure, which reveal an individual’s ability to evaluate health plan information and select the plan that best suits their circumstances.5
Of the NCCN centers reporting financial assessments, only 56% reported having repeated the assessment. Results from an additional study of NCORP sites showed that patients with metastatic colorectal cancer experienced a “major financial hardship” (defined as major debt, loans, refinancing, or a loss in income of at least 20%) within 3 months of starting treatment.2,3
The NCORP investigators proposed adapting the 5As approach (Ask, Advise, Assess, Assist, and Arrange), which has been successful in smoking cessation programs, to address financial toxicity in the community setting.3 Among the 5As, assess and assist are the most important steps in terms of effective intervention. Financial navigators, nurses, and clinicians can assess whether changing the treatment alleviates the financial burden and reduces nonadherence. Then they can assist by updating and moni-toring outcomes to ensure continued effective care.3
Takeaways from several studies presented at the 2022 Quality Care Symposium of the American Society of Clinical Oncology showed that investigators are researching integrative approaches to address finan-cial hardships.7,8
Investigators at The Ohio State University implemented a study to identify patients with breast, lung, or hematologic malignancies who had financial hardships and to optimize pathways to connect them with appropriate services.7 At 3 clinics—surgical breast oncology, hematology, and thoracic medical oncology—no financial screening systems had been in place previously. The screening asked: “How hard is it for you to pay for the very basics such as food, housing, medical care, and heating?” The responses ranged from “not hard at all” to “very hard” and included the option not to respond. Of the 4732 respondents, 10% choose “somewhat hard,” “hard,” or “very hard.”7
The investigators proposed a workflow that would cycle patients to the appropriate services; however, hurdles were identified in terms of accountability. For example, once a patient was identified as having a financial hardship, who should make the referral (eg, nurse, advanced practice provider, physician), how would the referral be documented (eg, phone call, email, consult), and who would be responsible for follow-up?7
A second, more complex and staggered workflow identified the stakeholders. After the intake nurse asked the screening questions, patients would be categorized as being or not being in urgent need of assistance. Those categorized as urgently needing help were assigned to a social worker, and those not so categorized were place on a weekly list and assigned to a patient navigator, who would either address the need or refer the individual to a social worker or financial counselor.7
These workflows rely on adequate staff for implementation and on optimized electronic health records to document information and relay it to appropriate parties.
Another study from the O’Neal Comprehensive Cancer Center at The University of Alabama at Birmingham came to the same conclusion after examining the referral process in place for patients treated at its gynecologic oncology clinic. Besides intake questions about ability to afford medication and financial distress, investigators conducted an additional financial hardship screening using the FACIT-COST.2,8
If difficulties were identified, patients were referred to social workers, lay navigators, financial counselors, and other appropriate services. Overall, among 115 patients who had at least 1 financial need, 38 were assisted by a lay navigator and 98 were referred, mostly to social workers (86.7%). In addition to assistance, investigators reported qualitative data from 43 patient interviews, with most participants reporting that they “felt positively” about the financial questions and con-sidered them relevant to their care.8
Universal financial screening is feasible and patients are open to participating, the authors noted; however, a dedicated financial hardship tool is needed. Fully integrating the assessment into work-flow to ensure continuity of support for patients with financial burdens remains an unmet need.8
Beyond major cancer centers, community cancer care facilities may be less able to handle cases of financial hardships, given their size, resources, and locations.3 For example, in a recent study, investigators sought to identify gaps in care pathways based on responses from stakeholders at 10 cancer care sites (5 rural and 5 nonrural practices).9
The researchers identified 6 financial-assistance elements of the process across all sites: distress screening, referrals, resource connection points, and pharmaceutical, insurance, and community resources. Opportunities to effect change included more systemic, proactive, and routine distress screening, staff dedicated to financial navigation, and the development of infrastructure to track availability of external resources. Investigators also noted that insurance expansion and pharmaceutical cost regulation are likewise needed to address financial hardship.9
As with the other studies, facilitators were identified as being essential: Staff members with institutional knowledge and relationships with external resources are needed to assess, process, and enact solutions for patients facing financial hardships, Biddell et al noted.9
“Financial hardship is most common among populations who have historically experienced challenges with accessing cancer care, including [individuals] who have low incomes, are uninsured/underinsured, or are racial/ethnic minorities, but financial hardship is becoming commonplace across the economic spectrum,” Yabroff et al wrote.2 “Advances in expensive cancer treatments threaten to widen disparities in access to care based on the ability to pay. Thus, understanding how institutions and providers identify patients experiencing financial hardship and the strategies used to mitigate hardship and address patient needs is increasingly important.”