Financial Hardship in Survivorship Care Delivery

Abstract

Cancer-related financial hardship is highly prevalent and affects individuals in the setting of cancer care delivery across the survivorship trajectory. Mitigating financial hardship requires multi-level solutions at the policy, payer, health-care system, provider, and individual patient levels. At the highest level, strategies for intervention include enacting policies to improve price transparency and expand insurance coverage. Also needed are implementing systematic screening and financial navigation in cancer care delivery; improving cost communication by provider care teams; developing patient-reported measures that incorporate the multiple, complex dimensions of financial hardship, as reflected in the Economic Strain and Resilience in Cancer tool; and advancing electronic medical record infrastructure to manage data on patient financial hardship. For individual patients, activating their social networks, community resources, and employers provides patient-level support resources to enhance coping. The proposed multi-level approach is needed to overcome financial hardship in the setting of high-quality, high-value cancer care delivery.

Advances in cancer treatment have considerably improved patients’ survival and clinical outcomes, (1,2) but cancer treatment is also associated with a key harmful consequence: financial hardship. Approximately 30%-50% of cancer patients experience a variety of economic burdens comprising financial hardship, which encompass direct health-care cost burdens of cancer care as well as other aspects of hardship, such as job loss, depleted savings, accumulated medical debt, and inability to meet daily living expenses, along with devastating consequences such as bankruptcy (3‐13). Financial hardship affects a wide spectrum of patients across geographic locations, health systems, sociodemographic groups, and cancer types (3,14,15). With cancer-related health-care costs rising, the severity and frequency of financial hardship have continued to intensify and amplify treatment disparities. Ultimately, financial hardship adversely affects patients’ health outcomes and has been associated with poorer quality of life, lower treatment adherence, and possibly worse survival (3,10,11). With additional related downstream impacts such as loss of health insurance and an accumulation of “bad debt” (uncompensated medical care), financial hardship has emerged as a major problem in cancer survivorship and a major obstacle to high-quality, high-value cancer care delivery.

Conceptualizing Financial Hardship as a Multi-Level Problem That Requires Multi-Level Solutions

The factors that lead to financial hardship can be understood using a conceptual model proposed by Yabroff et al. (16). As shown in Figure 1, financial hardship is a multi-level problem that spans multiple hierarchical levels in the health-care system. Therefore, mitigating financial hardship will require multi-level solutions that affect cancer care delivery, as summarized in the Figure 1 text boxes. Within the outer circles are the overall health-care policy environments at the national and state levels. Interventions include legislation to promote price transparency and remove the lifetime insurance coverage limit at the federal level and participation in Medicaid expansion or mandated oral chemotherapy parity at the state level. At the middle level, which includes health-care systems and physician practice groups, financial hardship can be addressed by instituting system-wide policies that include measures of financial hardship as a standard data element in electronic medical records. The inner levels include providers, patients and their families, and employers for working-age patients. Promoting patient–physician cost communication or using value assessment tools may embed the consideration of patient financial hardship in clinical care delivery.

Figure 1.

Strategies to prevent and mitigate financial hardship in cancer survivorship care delivery. Adopted and modified from Yabroff et al. (2009) (16). Copyright held by, and used with permission of, The University of Texas MD Anderson Cancer Center. EHR = electronic health record; PRO = patient-reported outcomes.

Identifying Financial Hardship in Cancer Patients and Survivors

Our discussion herein focuses on factors at the innermost levels. Actions at the patient–family–provider level can have immediate and direct effects on patients’ financial hardship during cancer care delivery over the survivorship trajectory. The severity of financial hardship typically peaks during active treatment and early survivorship, and multiple complex dimensions of financial hardship can persist during survivorship (8,9,12,14,17,18). There are different domains of financial hardship: material (eg, increased health-care expenses or depleted savings), psychological (eg, distress or anxiety related to finances), and behavioral (eg, reducing household spending or omitting necessary treatments to economize) (15,17,19,20). This model underscores the idea that financial hardship is a multi-dimensional patient-reported outcome in cancer (16,19‐21).

Thus, a major challenge for identifying financial hardship in patients in practice is establishing a standardized measurement that incorporates multiple dimensions. Validated measures related to the construct of financial hardship exist, including the Comprehensive Score for financial Toxicity-Functional Assessment of Chronic Illness Therapy tool, which measures general “financial toxicity” (22,23), and the In Charge Financial Distress/Financial Well-Being scale, which measures the psychological distress of financial hardship (24).

To date, the spectrum of behavioral aspects associated with financial hardship has not been extensively defined, because prior studies have focused mainly on the “maladaptive” behaviors of delaying, forgoing, or not adhering to treatment to economize in the face of cancer-related financial hardship (15,25,26). In a pilot study, we sought to further identify the spectrum of behaviors—what cancer patients do—in response, to manage, and to economize in the face of the material and psychological strain of financial hardship. We integrated behavioral items, along with material and psychological items, in a novel validated measure for financial hardship.

We surveyed patients from March 2019 to September 2019 who had initiated or received active treatment or survivorship care at a large metropolitan academic comprehensive cancer center (N = 232) and a public county hospital (N = 80); all patients were aged 18 years and older, had a pathologically confirmed diagnosis of stage I-IV cancer, and were undergoing ambulatory care in medical, surgical, or radiation oncology clinics (27,28). Patients’ median age was 58 ± 13 years; 57% were women, 34% were non-White, 43% had an annual household income less than $50 000, and 16% had Medicaid or were uninsured. The most common diagnoses were breast (37%), colorectal or other gastrointestinal (14%), lung (11%), prostate (10%), head and neck (10%), and hematologic (8%) malignancies; 38% of patients with solid tumors had local disease, and 62% had locally advanced or metastatic disease. Items on material, psychological, and behavioral coping dimensions of financial hardship were generated, and psychometric analyses were conducted for item reduction and evaluation of reliability, criterion validity, and known-group validity.

Using these items, we derived a valid, multi-dimensional measure of financial hardship that comprises the 15-item Economic Strain and Resilience in Cancer tool (Figure 2). Items are scored from 0 (least hardship) to 10 (most severe hardship). A factor analysis identified 2 underlying constructs with high internal consistency: 1) material or psychological (Cronbach’s α  =  0.91); and 2) behavioral (Cronbach’s α  =  0.87) hardship. The psychological distress item clustered with the material hardship construct. Patients frequently reported using a spectrum of behaviors and resilience factors to manage the demands of financial hardship. Behaviors included depending on members of their social network—family and friends—to support or manage their caregiving and nonpaid household work; using job benefits and flexibility to maintain income; and relying on community resources, such as patient assistance programs, foundations, and organizations, to cope with burdens. The overall Economic Strain and Resilience in Cancer financial hardship score (mean = 3.56 ± 2.64) correlated with the Comprehensive Score for financial Toxicity-Functional Assessment of Chronic Illness Therapy score (r = −0.76, P < .001) and the general Functional Assessment of Cancer Therapy quality-of-life score (r = −0.54, P < .001), demonstrating criterion validity. The overall Economic Strain and Resilience in Cancer score also statistically significantly differed by age (age <65 years vs age ≥65 years was associated with worse financial hardship; Wilcoxon rank sum test, P < .001), income (annual household income <$20 000 vs ≥$20 000 was associated with worse hardship; Wilcoxon rank sum test, P < .001), and race (non-White vs White race was associated with worse hardship; Wilcoxon rank sum test, P < .001) establishing known group validity. Material or psychological and behavioral subscales also demonstrated criterion and known-group validity (all comparisons P < .001).

Figure 2.

The Economic Strain and Resilience in Cancer (ENRICh) instrument. Copyright held by, and used with permission of, The University of Texas MD Anderson Cancer Center.

From Measuring to Mitigating Financial Hardship

There is a pressing need in real-world cancer care delivery for the early, efficient, and effective identification of patients who are experiencing financial hardship to better mitigate adverse impacts. This requires engaging solutions that cross from the level of providers, patients and their families, and employers to the level of health-care systems and practices (Figure 1). In many health-care systems and oncology practices across the United States, cancer care delivery innovations have advanced rapid screening and identification tools for other patient-reported outcomes, such as physical symptoms and psychological distress (29). Recent landmark studies demonstrated that integrating automated patient symptom reporting and distress screening into routine cancer care workflows considerably improved patients’ quality of life, survival (30), and emergency health-care use outcomes (31). However, advancements in systematically screening, identifying, and mitigating financial hardship have comparatively lagged in routine cancer care delivery (32). Implementing and disseminating financial hardship screening and measurement tools represent the next immediate care delivery priority to improve the early, efficient identification of vulnerable patients at the patient–provider level. Advancements are also needed in the regular evaluation, reevaluation, and navigation of financial hardship at multiple touchpoints in the delivery workflow at the health-care system level. This is only possible if the electronic medical record infrastructure can be expanded to capture, display, and manage data on patient financial hardship measures. It is also important to identify the multi-level patient, provider, clinic, and health-care system barriers to adopting and implementing these adaptations; these barriers can be infrastructural, technical, cultural, and attitudinal (21,32).

Financial Hardship Navigation

Recently, tremendous strides have been made in developing new high-value financial navigation pathways for cancer patients (33‐37); however, key steps remain to comprehensively enhancing financial hardship care delivery. Financial planning is important to preventing and mitigating financial distress; however, it is extremely difficult for patients and their families to precisely predict the impact of treatment on their finances, given the complexity of cancer care, the frequently uncertain trajectory of disease response, the need for subsequent lines of treatment, and the severity of cancer and treatment-associated morbidity and disability.

Cost communication between patients and physicians can provide estimates of the costs associated with various treatments along with information on the effectiveness and side effect profiles. Such communication—if frequent and iterative—can alleviate the financial uncertainty of cancer care, which allows patients to make financial plans. Although cost communication is recognized by the American Society of Clinical Oncology Cost of Cancer Care (38) and the Institute of Medicine (now National Academies of Sciences, Engineering, and Medicine) Committee on Improving the Quality of Cancer Care (39) as an essential component of high-quality cancer care, a review article showed that the prevalence of cost communication, as reported by patients and physicians, was 27% and 47%, respectively (40). The major barrier identified by patients and providers was a lack of accurate, accessible, and understandable cost information, especially information on out-of-pocket costs, the key contributor to the material burden of financial hardship in cancer patients. Estimating out-of-pocket costs is challenging given the wide variety of insurance benefit designs across health insurance plans and the limited price transparency in the health-care marketplace in the United States (41). There have been efforts by states, insurers, and employers to promote price transparency in the health-care marketplace (42,43), but the complex multidisciplinary nature of cancer care makes this effort even more daunting. However, from a public health perspective, meaningful potential gains are expected from mitigating the multi-level factors related to financial hardship in cancer patients, given the combined high prevalence of cancer, high costs of cancer therapy, and fast diffusion of costly new therapies, thus highlighting the importance of addressing financial hardship in care delivery.

Financial hardship is now recognized as a frequent “toxicity” that arises after a diagnosis of cancer and persists across the cancer survivorship trajectory. Advances in conceptualizing and measuring the complex dimensions of financial hardship highlight pathways for care delivery interventions, but the successful mitigation of financial hardship will ultimately require multi-level solutions.

Notes

Disclosures: None.

Acknowledgements: Dr Shih is supported by NIH/NCI (R01CA207216 and R01CA225646) and Health Care Services Corporation/BCBSTX. Dr Smith is supported by NIH/NCI K07CA211804 and this research was supported by the Andrew Sabin Family Fellowship. Dr Lowenstein is supported by Health Care Services Corporation/BCBSTX. Dr Mendoza is supported by NIH/NCI R01CA242565. Support provided, in part, by the Assessment, Intervention and Measurement (AIM) Shared Resource through a Cancer Center Support Grant (CA16672, PI: P. Pisters, MD Anderson Cancer Center), from the National Cancer Institute, National Institutes of Health, and through the Duncan Family Institute for Cancer Prevention and Risk Assessment.

Data Availability

Research data not available at this time.