Childhood Cancer Survivors, Financial Toxicity, and the Need for Multilevel Interventions

Financial toxicity is produced by multiple forces at the patient, family and acquaintance, provider, organizational, policy, and societal levels of influence (Fig 1).³⁴  Researchers usually measure financial toxicity at the individual level by tracking patients’ out-of-pocket healthcare spending³⁵  or using self-reported measures of financial distress.³⁶  Individual-level drivers of financial toxicity include low-incomes,^5,37  mental or physical comorbidities,³⁸  or complications resulting from cancer treatment that require continued clinical monitoring.³⁹  Most individual-level interventions on barriers to care, which include lack of financial or employment opportunities, focus on patient education or empowerment related to financial barriers to care,⁴⁰  but these approaches often place the burden of solving financial toxicity on patients, rather than on systems.⁴¹  For example, asking a patient to discuss financial toxicity with their provider without also addressing structural barriers to care, like transportation difficulties, high fees, or language barriers, may give patients skills that are ineffective in the face of the complex nature of financial toxicities and systemic inequities that we describe below.

The resources possessed by patients’ families and acquaintances can also influence financial toxicity.⁴²  Families’ ability to provide transportation, financial, or childcare support can mitigate the financial consequences of cancer treatment, whereas the absence of such resources could exacerbate financial hardships, contribute to disruptions in employment¹⁸  and health insurance coverage, and increase caregiver burden.⁴³  Interventions at this level have targeted resource distribution to households experiencing material hardship⁴⁴  and worked with families to increase use of financial supports.⁴⁵ 

Similarly, provider and organizational resources can impact how clinics and hospitals acknowledge and address financial toxicity. Providers’ ability to initiate discussions on the costs of cancer care, as well as organizational guidelines on the initiation of such discussions, help patients and care teams recognize financial toxicity. In addition, providers’ referral to organizational resources for financial toxicity can introduce accessible means for families to improve their financial status. At the provider level, interventions have introduced cost conversation tools and training to help providers discuss financial toxicity with patients,³⁴  but more research is needed to understand how providers incorporate such resources into practice.³⁴  Organizations’ practice guidelines often address financial barriers to care like high cost treatments but do not explicitly mention financial toxicity,^46,47  indicating a need for guidelines targeting the long-term nature of financial toxicity. Similarly, practice settings like clinics and hospitals have broadly assessed families’ material needs (eg, insufficient funds for housing and food) and identified institutional resources that could reduce financial distress (eg, philanthropic support)⁴⁸  or help families navigate the health system (eg, trained nurses or social workers).¹⁶ 

The policy and social contexts of health in the United States inform all preceding levels of influence for financial toxicity. Political-economic trends, like the deregulation and privatization of the health sector, restrict eligibility for public health insurance programs and lead to reliance on employment-based or private health insurance options that push treatment costs onto patients,^49–52  and resulting underinsurance or uninsurance impacts survivors’ mortality and ability to complete needed follow-up care.^53,54  Childhood cancer survivors whose employment can be impacted by their cancer treatment are at particularly high risk of underinsurance or uninsurance.^55,56  Systemic racism (ie, the institutional policies and practices that systematically discriminate against racially and ethnically marginalized communities)⁵⁷  and other inequitable systems based on class, geographic location, or other socio-demographic markers, could lead cancer survivors who are members of these groups underserved by the current political-economic systems to potentially be more likely to experience financial toxicity. These groups include people who have low incomes,⁴⁹  live in rural areas,⁵⁸  lack insurance,⁵⁹  identify as lesbian, gay, bisexual transgender, or queer/questioning,⁶⁰  have a disability,⁶¹  speak a language other than English,⁶²  and/or are members of marginalized racial or ethnic groups.⁶³  In a health system that perpetuates the ill-health of these groups and extracts profit at the cost of patient well-being, members of these groups face intensified financial strain on top of systemic discrimination. For example, racially and ethnically marginalized groups in the United States are more likely to live in poverty and struggle to afford preventive and acute care,⁶⁴  contributing to disparities in maternal mortality,⁶⁵  cardiovascular disease,⁶⁶  and allostatic load associated with chronic stress within pediatric populations,⁶⁷  among other conditions. Interventions at the societal level have included political movements for the expansion of public healthcare⁶⁸  as well as calls for institutions and institutional actors to structurally address systemic racism.⁶⁹ 

Multilevel interventions, which address at least 2 or more levels of influence,⁷⁰  can address both upstream and downstream causes of financial toxicity by targeting structural determinants while also providing relief for patients and their families. Figure 1 shows that multilevel interventions (1) more accurately address how financial toxicity functions in clinical settings, and (2) illustrate how each level of influence places an unequal burden of financial toxicity on underserved patients who live in difficult socioeconomic contexts. The figure indicates that interventions are needed at multiple levels simultaneously; an individuals’ experience of financial toxicity is not only the product of their bodily condition or spending, but also the result of a patients’ social support, patients’ awareness of financial toxicity via providers and organizations, health insurance possibilities constrained by policy, and societal values that prioritize profit over health and further harm members of marginalized communities. Multilevel interventions could include (but should not be limited to) combinations of: federal or state policy that mandates employers cover paid sick leave⁷¹ ; electronic medical record alerts that identify patients at-risk for financial toxicity⁷² ; provider and community education programs on the material and emotional needs of patients with cancer; financial navigation incorporated into patient’s treatment plans^72,73 ; and providing financial support for patients’ parking, medical, and transportation costs.⁷⁴  These interventions address known sources of financial toxicity and researchers and providers have explored them within single-level financial aid efforts.^71–74  Aggregate data across such interventions could inform recommendations for organizational practice guidelines to address financial toxicity or for state or national policies to expand public insurance programs, increase regulation of high cost drugs with little patient benefit, or provide financial assistance for food and housing for families of patients during and after completion of cancer therapy.

Multilevel interventions are uniquely positioned to investigate and address systems as they work across interacting levels of influence and socioeconomic contexts that shape patient outcomes.⁷⁵  As such, multilevel interventions can address financial toxicities at multiple points of entry, helping ease patient’s financial realities while maintaining a focus on the systems that preserve the financially toxic effects of cancer. Multilevel interventions for financial toxicity take on more importance as the cost of cancer care is projected to increase over time.⁷⁶  Effective multilevel interventions for financial toxicity are sorely needed, as one of society’s most vulnerable groups of people—childhood cancer survivors, some of whom also occupy various marginalized identities or circumstances—face the greatest financial barriers to care.