Perceived financial hardship among patients with advanced cancer

Data collection and analysis

In-person data collection occurred in the clinical waiting area before the clinician visit or in the treatment room with the patient using a consecutive, convenience sample. The nursing staff checked the clinic lists daily for possible patient participants. Patients with metastatic cancer were identified and then approached for consent. After we had received the patient’s consent, the administration of the instruments took about 20 minutes to complete. The data were then entered and verified in REDCap (Research Electronic Data Capture), which is hosted at the University of Pittsburgh.²¹The levels of symptom distress, quality of life, perceived financial hardship, and cancer-related distress were described through continuously measured variables. Descriptive statistics, measures of central tendency (mean and median), and dispersion (standard deviation and range), were obtained for the subscales and total scores. Correlation analysis was used to describe the relationship between perceived financial hardship and quality of life, symptom distress, and cancer-related distress. These primary outcome variables were further explored according to the level of dichotomized perceived financial hardship using mean score as the cut point. Independent sample t tests were used to compare patients experiencing high perceived financial hardship with those experiencing low perceived financial hardship.

Results

In all, 100 patients participated in the study. Any missing data points were replaced with the mean score for that variable, although this was minimal in this study. Most of the participants were women (67%), and the average age of the participants was 63.43 years (SD, 13.05; Table 1). Of the total number of participants, 73% were white, 26% were black, and 1% were Asian. Most of the participants were either retired and not working (39%) or disabled or unable to work (34%). Almost all of the participants had some form of insurance, with 99% having either private or public health insurance. A variety of cancer types were represented in this patient population, with higher percentages of breast (25%), gynecologic (10%), lung (19%), and colon/rectal cancer (15%). Of the total number of participants, 35% had annual household incomes below $20,000, and 50% had annual household incomes of more than $20,000. On average, participants had 13.48 years (SD, 2.78) of formal education.

Descriptive statistics for the primary outcome variables can be found in Table 2. The average score for cancer-related distress based on the NCCN Distress Thermometer tool was 4.16 (SD, 3.26). The average score for the McCorkle Symptom Distress measurement was 25.45 (SD, 9.34). For quality of life, the average FACT-G total score was 73.77 (SD, 19.40). Of the FACT-G subscale average scores, physical well-being was 17.35 (SD, 7.50), social/family well-being 24.21 (SD, 5.25), emotional well-being 16.34 (SD, 5.42), and functional well-being 15.87 (SD, 6.78). Participants’ average score for the spiritual well-being measure was 35.20 (SD, 9.25) and the combined FACT-G and spiritual well-being average score was 108.97 (SD, 26.07). The total average score for perceived financial hardship was 35.70 (SD, 13.87), with subscale average scores of 3.44 (SD, 2.36) for financial strain, 5.73 (SD, 1.91) for inability to make ends meet, 16.43 (SD, 8.92) for not enough money for necessities, and 10.63 (SD, 2.70) for economic adjustments.

We conducted a bivariate correlation analysis to assess the relationship between perceived financial hardship and three other primary outcome variables (Table 3). These analyses showed significant low to moderate correlations with overall cancer-related distress (r, 0.439; P < .001), symptom distress (r, 0.409; P < .001) and overall quality of life scores (FACT-G and spiritual well-being combined score: r, -0.323; P < .001).

Forty-three participants reporting high perceived financial hardship experienced worse quality of life overall (FACT-G and spiritual well-being; P = .002), worse FACT-G total scores (P < .001), worse physical well-being (P < .001), worse social/family well-being (P = .029), worse emotional well-being, and no significant difference for functional (P = .082) or spiritual well-being (P = .453), compared with those with lower economic hardship. In overall cancer-related distress, participants with higher perceived financial hardship reported higher levels of cancer-related distress (P < .001) than those with lower perceived financial hardship. For those participants reporting higher perceived financial hardship there was also worse symptom distress (P < .001), compared with those with lower economic hardship (Table 4).

Discussion

Overall, this report provides data to illuminate our understanding of disparities in well-being that may be present in patients with advanced cancer. Our analysis found that patients with advanced cancer who have higher perceived financial hardship have significantly higher overall cancer-related distress, symptom distress, and poorer overall quality of life. In this study’s population of patients with advanced cancer, the most notable areas of economic hardship identified by participants were: not having enough money for necessities in the 3 months before the survey and the inability to make ends meet during the same time span, with difficulty paying bills and not having enough money left at the end of the month being most noteworthy among this study’s patient population. Financial strain and making economic adjustment were not as notable in the category of perceived financial hardship.

In regard to not having enough money, participants most commonly cited not being able to afford everyday necessities such as food, clothing, medical care, or a home, as well as leisure and recreational activities. These findings are further supported with the positive, moderate associations between perceived financial hardship and symptom distress and overall cancer-related distress found in this cohort of patients with advanced cancer and the negative, moderately associated relationship between perceived financial hardship and overall quality of life in this study’s sample.

Although these findings have been confirmed in the literature on cancer-related distress, our findings add to our knowledge on both economic and cancer-related distress exclusively in patients with advanced cancer.^9,22 The broader cancer-related distress literature has also found an association between being younger and having a lower household income as risk factors for increased financial hardship; however, the perception of financial strain and magnitude was a more significant predictor of quality of life and perception of overall well-being.^{6,8-9,12,22-23} Furthermore, patients with cancer who noted having higher financial distress typically reported decreased satisfaction with cancer care which also influenced their adherence to treatment and quality of life.²⁴