Financial Hardship in Adolescent and Young Adult Oncology: The Need for Multidimensional and Multilevel Approaches

The cost of cancer care is substantial, steadily increasing, and significantly disruptive for patients and their families. The magnitude and impact of these costs, known as financial hardship or toxicity, comprise material (monetary resources), psychosocial (distress and worry about costs), and behavioral (coping strategies to manage costs) dimensions.^1-3 In the article that accompanies this editorial, Kishimoto et al⁴ examined the material costs of cancer among children, and adolescents and young adults (AYAs) in Japan from the perspective of the public payer. To our knowledge, this is the first population-based study to leverage an administrative claims database to examine payer costs among children and AYAs with cancer in Japan, a country with universal health care. Their findings revealed median 1-year postdiagnosis costs per patient of 2,832,840 in Japanese Yen ($28,047 in US dollars), costs for pediatric and AYA patients that are disproportionately greater than previous reports of Japanese adults with cancer.^5,6 These results are broadly consistent with studies from Canada, Chile, India, and the United States, underscoring the greater financial burden on the health care system for treating younger patients with cancer.^7-11

In a universal health care system, the costs of cancer care are subsidized by the government. In the Japanese health care system, physicians and hospitals are paid a set amount nationally, and patients are typically responsible for 30% of the out-of-pocket health care costs. Depending on the care received, 30% may represent a large cost burden; however, government subsidies are offered to help offset this for patients. Because this study used administrative claims, the out-of-pocket costs for patients inclusive of subsidy were not in scope of this analysis. By contrast, the US health care system has significantly more variation in coverage, especially prominent in those with Medicaid and those age younger than 65 years not eligible for Medicare. AYAs with cancer may have not only inadequate insurance coverage, but also limited financial assets and significant work interruption, leading to greater financial hardship than any other age group with cancer.^12-17 Moreover, younger patients with cancer are more likely to use harmful cost-saving strategies (eg, missing appointments or procedures and medication nonadherence)¹⁸ and to experience bankruptcy, which is a risk factor for mortality.¹⁹ Health care policy needs to continually be evaluated and modified to adapt to complex health care systems and, more importantly, to ensure that patients who are at risk of increased financial hardship are properly supported to reduce potential adverse health outcomes.

The comparison of pediatric patients to AYAs illustrates that even within groups that are at greater risk of financial hardship, there are subgroups of patients who may have particular challenges. Kishimoto and colleagues noted that pediatric patients with cancer had the highest overall costs, but AYAs in Japan may experience more individual, out-of-pocket costs because subsidies provided to children are more generous than those for AYAs.⁴ Similarly, in the United States, we know that financial hardship appears to vary among adolescents (age 15-17 years), emerging adults (age 18-25 years), and young adults (age 26-39 years).^13,20,21 For AYAs who are navigating a developmental period characterized by increasing independence, the significant costs of cancer may be particularly debilitating and when coupled with changing insurance coverage, increasing financial commitments (eg, mortgages and dependents), and disruptions in employment, the achievement of financial goals can be obstructed or delayed.²²

In addition, 5-year survival rates in AYAs for all cancer types combined are lower in racial or ethnic minorities, especially for non-Hispanic blacks.²³ Delays in diagnosis and treatment because of differences in health insurance status are key contributors to these disparities in outcomes.²⁴ Although not well characterized in AYA research, racial and ethnic disparities in financial burden are well documented in cancer research,^25,26 suggesting that racial or ethnic AYA minority groups may have additional risk for financial burden compared with non-Hispanic, white AYA cancer survivors. Accordingly, it is important to recognize that AYAs are not a homogeneous group but represent intersecting identities that reflect varying levels of risk for financial hardship and thus varying needs and approaches to care.

To better understand the costs of cancer, we need a multidimensional perspective and an awareness of both the objective and subjective aspects of financial hardship. Kishimoto and colleagues provided an important perspective on the objective aspects of financial hardship by highlighting the material costs at the payer and institutional levels.⁴ The results of their study can inform further analysis of utilization including length of hospitalization, which represented a driver for cost in children with cancer. Although beyond the scope of their study, financial cost at the patient level is influenced by the direct out-of-pocket cost in addition to psychosocial and behavioral aspects of financial hardship.^18,27-31 These subjective aspects of financial hardship can provide a more complete perspective on the patient experience. Among AYAs, financial concerns are some of the most distressing and negatively affecting psychosocial concerns.^20,28,32-35 In a recent US-based, nationally representative survey of financial hardship, cancer survivors who were diagnosed as an AYA were more likely to report at least one measure of financial hardship in material and behavioral domains and more likely to report worry about medical costs of health care than individuals without a history of cancer.³⁶

The psychosocial and behavioral aspects of financial hardship are not limited to the patient.^37,38 For many AYAs, parents, partners, and friends are a significant source of emotional and tangible support throughout treatment and may even be providing financial support. These caregivers are an essential part of the cancer experience and may help buffer the experience of financial hardship for AYAs.³⁹ As such, their perspectives are equally important. Amplifying the voices of patients and caregivers can be accomplished through well-designed patient-reported outcomes. Unfortunately, although measures of financial hardship show promise for older adults with cancer, only one measure has been developed for AYAs⁴⁰ and none for caregivers of AYAs.⁴¹ Moreover, cultural tailoring or validation is currently lacking but essential to ensure that patient- and caregiver-reported outcome measures appropriately reflect the nuances of an increasingly diverse AYA patient population.⁴¹

At the clinician level, we must create space for difficult or sensitive conversations about financial hardship with our patients.^42,43 These conversations can be facilitated through the implementation of screening measures of financial hardship,⁴⁴ the use of various prompts to start a conversation about the costs of a patient's care,⁴⁵ normalizing the discussion about financial costs by making it a routine part of the clinical assessment,⁴⁶ and using and avoiding low-value treatment to mitigate the potential for financial hardship in patients.⁴⁷ Using some combination of the above approaches may yield more opportunities for shared decision making and improve treatment satisfaction for patients.

Understanding the scope and complexity of financial hardship is essential to identify strategies for addressing the impact on our health care systems, our providers and staff, and, most importantly, our patients and their families. Kishimoto et al⁴ highlighted the significant costs at the payer and institutional level and we have briefly described patient-, caregiver-, and provider-level considerations. Ideal intervention approaches should be multilevel in nature, targeting policy-, institutional-, provider-, and patient-level factors.^48,49 At the policy level, we need to ensure that all groups, especially those at most risk, have access to affordable cancer care. Most AYAs will survive their cancer.²³ We can and must do more to enable them to live full, healthy, and productive lives, unburdened by crippling medical debt.

AUTHOR CONTRIBUTIONS

Conception and design: All authors

Financial support: John M. Salsman

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Financial Hardship in Adolescent and Young Adult Oncology: The Need for Multidimensional and Multilevel Approaches

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/op/authors/author-center.

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