Comparison of Two Validated Instruments to Measure Financial Hardship in Cancer Survivors: Comprehensive Score for Financial Toxicity (COST) versus Personal Financial Wellness (PFW) Scale

Abstract

Purpose

Financial distress and financial toxicity are recognized challenges in cancer survivorship. There is currently no universally accepted instrument to quantify patient-reported financial hardship. We hypothesized that financial distress is correlated to financial toxicity. We compared two widely accepted instruments to measure financial distress and financial toxicity.

Methods

Patients in the follow-up phase of care at a single institution were surveyed regarding demographic and economic status. Financial toxicity was measured using the Comprehensive Score for Financial Toxicity – Functional Assessment of Chronic Illness (COST-FACIT) and financial distress using the Personal Financial Wellness (PFW) Scale. Surveys were analyzed for correlation and internal consistency. Patient score distributions were compared. Associations between survey scores and patient factors were assessed using multivariable linear regression models.

Results

A total of 116 patients were included. Scores from the COST-FACIT showed a strong correlation with PFW scores (r =0.90, p <0.0001). Scale reliability was high for both the COST-FACIT (α =0.92) and PFW (α =0.97) surveys. Score distributions exhibited left skew for both surveys, with 9.5% of patient scores falling in the worst quartile of possible scores on each respective survey. The strongest predictors of financial distress and financial toxicity included young age, lower monetary savings, lower household income, and less perceived social support during cancer treatment.

Conclusions

The COST-FACIT measure of financial toxicity correlated strongly with PFW measure of financial distress. Although these instruments were designed to assess different concepts (financial distress vs financial toxicity), they gave strikingly similar results. Either instrument may be used as a meaningful patient-reported outcome for study of financial hardship in cancer survivors.

Introduction

Financial toxicity is an important patient reported outcome measure (PROM) in patients with cancer. Cancer diagnosis and treatment are associated with high out-of-pocket costs, acquired debt, wage losses, and psychosocial stress related to finances. These financial toxicities of cancer care are associated with diminished quality of life and may worsen cancer outcomes in cancer survivors [1–5]. Patients who experience financial hardship may alter their behavior in order to cope with their expenses, such as noncompliance with anti-cancer medication and postponement or avoidance of other medical care [6–10]. Radiation therapy, a treatment modality received by over half of cancer patients, has been specifically associated with increased out-of-pocket costs and financial hardships amongst cancer survivors [9, 11].

Numerous tools have been employed to measure financial toxicity[12, 13], but none have been established as the definitive measurement. Two of the most widely used instruments are the InCharge Personal Finance/Welfare Scale (PFW) and the Comprehensive Score for Financial Toxicity (COST). The PFW scale was developed and validated as a tool to measure the level of distress and well-being emanating from one’s personal financial conditions[4]. Though not specifically designed for cancer patients, the PFW has been extensively used to study financial distress in cancer populations [6, 14–17]. In contrast, the Comprehensive Score for Financial Toxicity – Functional Assessment of Chronic Illness Therapy (COST-FACIT) is a validated cancer-specific PROM to assess the financial toxicity of patients with advanced cancer diagnoses. In the development of the COST, financial toxicity was identified as a composite of five themes: financial, resource, affect, coping and effect on family.

In our previous work, we found that the COST-FACIT performs with similar psychometric properties in the radiation oncology population as compared to the advanced cancer population where the COST-FACIT was initially validated [18]. In the current study, we hypothesized that patient financial distress and well-being is correlated to financial toxicity.

Methods And Materials

Participants and Demographics

Institutional IRB approval was obtained for this study. From May to July 2019, patients age 18 or older from a single institution were enrolled during scheduled radiation oncology clinic visits. Informed consent was obtained from 147 patients. Participants were asked to complete a demographics survey as well as the COST-FACIT and PFW surveys (described below). The demographics survey collected information on the participant’s age, gender, race, highest education level, employment status, household income, amount of monetary savings, insurance type, household size, distance travelled for treatment, and degree of cancer treatment-related support from friends or family. Other cancer characteristics such as diagnosis, radiotherapy technique, and other treatment modalities such as surgery or systemic therapy were obtained from the electronic medical record.

Financial Distress and Financial Toxicity Surveys

Financial distress was assessed using the PFW. The development and validation of the PFW has been previously described [19]. The survey consists of eight items representing the sense of an individual’s current financial state as well as the sentiment towards the individual’s own financial state. Composite scores range from 1.0 (overwhelming financial distress/lowest financial well-being) to 10.0 (no financial distress/highest financial well-being), with 5.0 representing average financial distress. Financial toxicity was measured using the COST-FACIT. The instrument is a validated measure of financial toxicity for patients with an advanced cancer diagnosis [20]. We used Version 2 of the COST-FACIT, which contains twelve items with a 0–4 response scale. It differs from the original validated version by the addition of the twelfth item statement “My illness has been a financial hardship to my family and me.” Total scores range from 0–48, with lower scores corresponding to higher patient-reported financial toxicity.

Results

There were 147 patients who met eligibility criteria for participation, and 140 patients completed both PFW and COST-FACIT. Of those completing both surveys, 116 participants had previously completed radiation therapy and were included in this analysis of patients in the survivorship phase of care. Patient demographic and clinical characteristics are presented in Table 1. The median age was 66 years (range 28–88 years), and 52.6% were male. The median time from radiotherapy to survey completion was 9 months (IQR 3–24 months). A majority of participants were Caucasian (81%) or African American (14.7%). All patients had health insurance, primarily through Medicare (50%) or private insurance (44%). A bachelor’s degree or higher education was achieved by 46.5% of patients, while 20.7% completed high school or less. The most common primary diagnoses included head and neck cancer (27.6%), prostate cancer (18.1%), and lung cancer (15.5%). Radiotherapy techniques included intensity modulated radiotherapy (47.4%), stereotactic radiotherapy (29.3%), three-dimensional conformal radiotherapy (19.0%), and brachytherapy (4.3%). In addition to radiotherapy, 51.7% of patients received systemic therapy and 30.2% had surgical treatment by the time of survey completion.

The mean COST-FACIT score ± standard deviation for this population was 30.3 ± 12.2 (range 1–48, median 32), and the mean PFW score was 6.7 ± 2.5 (range 1.0–10.0, median 6.8). Patient COST-FACIT scores correlated very strongly with PFW scores (r = 0.90, p < 0.0001, Fig. 1). The Cronbach’s alpha, a measure of the reliability of all items within each survey, was high for both the COST-FACIT (α = 0.92) and PFW (α = 0.97) surveys. Overall both the COST-FACIT and PFW scores exhibited a left skew towards higher scores in this study population, though COST-FACIT scores were more uniformly distributed (Supplemental Fig. 1). The distribution of patient scores for both surveys are arranged by score quartiles in Table 2. A total of eleven patients (9.5%) produced COST-FACIT scores in the lowest quartile of possible scores, indicating high levels of financial toxicity. Similarly, eleven patients (9.5%) scored in the lowest quartile of possible PFW scores. A composite score of 4.0 on the PFW corresponds to high financial distress/poor financial well-being, and 15.5% of participants indicated scores of 4.0 or lower.

On univariate analysis, the same factors were associated with financial distress and financial toxicity (Table 1). Older age, Caucasian race, higher educational attainment, higher household income, higher savings balance, insurance (non-Medicaid) status, and support from family/friends were associated with higher scores (less financial distress or financial toxicity) on both the COST-FACIT and PFW surveys. Gender, marital status, additional other treatments such as surgery or chemotherapy and radiation technique did correlate with scores on either scale.

Patient factors with significant associations (p < 0.05) were considered in multivariable linear regression models, as no a priori factors for adjustment were specified. Results for the fully adjusted multivariable models including all significant factors in the univariate analysis are shown in Supplemental Table 1. The final multivariable models included only covariates that significantly improved model fit and demonstrated strong associations with financial toxicity (Table 3). In the final regression analysis, higher monetary savings and greater perceived support from family or friends during treatment were strongly associated with increased COST-FACIT and increased PFW scores. Age ≥ 65 years was significantly associated with higher COST-FACIT scores and approached significance with PFW scores, while higher household income was also associated with increased PFW score.

Discussion

Financial toxicity is increasingly recognized as an important patient reported outcome. To successfully develop interventions to reduce financial toxicity in cancer survivors, tools must reliably and accurately quantify financial toxicity. We compared two commonly used instruments to measure financial toxicity in a cancer population treated with radiotherapy.

We observed a strong correlation between personal financial distress and financial toxicity. The PFW Scale measures overall financial distress with items that primarily address psychosocial responses to one’s financial situation [19], while the COST-FACIT was designed to assess 5 dominant themes related to financial toxicity identified from qualitative interviews – affect, coping, family, financial, and resources [21]. The concept of financial distress is related mostly to the theme of affect, though in part to coping and resources as well. As the COST-FACIT and PFW give comparable and consistent results, we conclude that either instrument may be used to study financial distress. Studies using the COST-FACIT or PFW instrument may potentially be pooled for analysis.

Given the difference in purpose of each instrument, we had anticipated to find differences in patient and cancer treatment factors that correlated with each instrument. Since the PFW pre-dated and informed the development of the COST-FACIT, some overlap in results is not surprising. However, the degree of almost perfect correlation between the PFW and COST-FACIT was unexpected. Our results suggest that the concept of financial toxicity defined by the COST-FACIT may be entirely a measure of financial distress, and that features of financial toxicity unrelated to distress may not be captured by the COST-FACIT. Prior works in the study of financial toxicity have considered domains beyond financial distress. For instance, in a systemic review of methodology for assessment of financial toxicity, Witte et al suggest 6 relevant subdomains: active financial spending, use of passive financial resources, psychosocial response, support seeking, coping with care and coving with one’s lifestyle [12]. No single instrument currently captures all of these subdomains. Additional work should be done to investigate and refine the existing instruments to better capture a holistic assessment of financial toxicity.

The extent of perceived support from family or friends during cancer treatment was strongly correlated with financial distress and financial toxicity. Previous works have identified age, extent of monetary savings and household income as predictors of financial toxicity [7, 16]. The impact of family support is a novel finding which highlights the positive influence of a strong social support network on patients’ interactions with the financial burdens of cancer treatment. Increased social support has been associated with an overall improvement in quality of life among patients with a cancer diagnosis [22–24]. Assessment of family support may be considered as a part of screening for potential financial hardship.

This study has several limitations. First, it is not possible to conclude from our data that one survey instrument exhibited superior performance over the other in this setting. Both the COST-FACIT and PFW Scale yielded comparable score distributions, strong internal consistency, and showed association with similar patient factors. We did not measure the relative convenience of implementing each survey, though we expect that either survey can be administered with similar ease and completed quickly without disruptions in clinic encounters. The patient demographic factors we evaluated for association with financial toxicity did not include patient employment status; we collected employment status from each participant via survey, though on review it was found that a majority of retired participants self-identified as “unemployed” which skewed the number of unemployed patients in this study. Finally, this study was performed in a radiation oncology follow-up clinic setting and may not be generalizable in a general cancer population.

Conclusions

Financial distress as measured by the Personal Financial Wellness (PFW) scale is strongly correlated to financial toxicity as measured by the Comprehensive Scale for Financial Toxicity (COST-FACIT). Either COST-FACIT or PFW may provide meaningful patient reported outcome. Further work should be done to refine an instrument that provides a comprehensive assessment of financial toxicity in cancer survivors.

Declarations

Funding Sources: The authors did not receive support from any organization for the submitted work.

Competing Interests:The authors have no relevant financial or non-financial interests to disclose.

Author Contributions:

Kevin A. D’Rummo: data curation, investigation, visualization, writing – original draft

David Nganga: data curation, investigation

Lynn Chollet-Hinton: formal analysis, visualization, writing – review and editing

Xinglei Shen: conceptualization, investigation, methodology, supervision, writing – review and editing

Data Availability: The datasets generated during and/or analysed during the current study are available from the corresponding author on reasonable request.

Ethics Approval: This study was approved by the University of Kansas Medical Center Human Subjects Committee

Consent to Participate:Informed consent was obtained from all individual participants included in the study

Consent to Publish: N/A

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