Perceived financial hardship among patients with advanced cancer

The American Cancer Society has identified a disparity in cancer death rates, noting that persons with lower socioeconomic status have higher rates of mortality.¹ This is attributed to many factors, but it is largely owing to the higher burden of disease among lower-income individuals.¹ A component of this disease burden is measured by assessing the patient-reported outcome of cancer-related distress. The National Comprehensive Cancer Network (NCCN) Distress Management Guidelines have defined distress as “a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social and/or spiritual nature that may interfere with the ability to cope with cancer, its physical symptoms and its treatment.”²

Financial hardship related to cancer diagnosis and treatment is increasingly being recognized as an important component of disease burden and distress. The advancements in costly cancer treatments have produced burdensome direct medical costs as well as numerous indirect costs that contribute to perceived financial hardship.^3,4 These indirect costs include nonmedical expenses such as increased transportation needs or childcare, loss of earnings, or loss of household income due to caregiving needs.³ Moreover, indirect costs are often managed by patients and families through their use of savings, borrowing, reducing leisure activities, and selling possessions.³ Even though efforts to increase health coverage, such as the Affordable Care Act, have reduced the rates of individuals who are uninsured, persons with cancer who have insurance also face challenges because they cannot afford copays, monthly premiums, deductibles, and other high out-of-pocket expenses related to cancer treatment that are not covered by their insurance such as out-of-network services or providers.^5-7

Thus, financial hardship may have an impact on several areas of a patient’s life and well-being, but the effects are commonly undetected.^8-10 Research has established that financial strain can influence treatment choices and adherence to therapy.¹¹ Furthermore, the effects of financial strain have been identified across the cancer care continuum, from diagnosis through survivorship, suggesting a bidirectional relationship between financial strain and well-being.¹¹ Financial strain may reduce patient quality of life and worsen symptom burden because of the patient’s inability to access needed care, poor social supports, and/or increased stress.^11-12 These worsening outcomes may also increase the use of financial reserves and affect their ability to work.^7,11 Financial difficulties may also be associated with anxiety and depression, leading to worse quality of life and greater distress and symptom burden.¹² Identifying groups at high risk for financial strain is crucial to ensure that resources are available to assist these populations.¹³ This burden can be even more pronounced in minority and underserved patients with cancer.⁷ Patients with advanced cancer are especially vulnerable to the burden of increased costs because of the use of expensive targeted therapies; their improved survival, which extends the time of expenditure; and increased use of financial reserves.⁹ Financial hardship in patients with advanced cancer is not well understood or characterized,⁹ which is why this study aimed to better quantify distress in advanced stage cancers by describing :

▪ A cohort of patients with advanced cancer and their levels of quality of life, symptom distress, cancer-related distress and perceived financial hardship;
▪ The relationship between perceived financial hardship, quality of life, symptom distress and overall cancer-related distress; and
▪ Quality of life, symptom distress, and overall cancer-related distress according to level of perceived financial hardship.

Methods

This study is a cross-sectional, descriptive, comparative study of distress, including perceived financial hardship, among patients with advanced cancer who were receiving palliative care treatment in two outpatient medical oncology clinics in Western Pennsylvania. The data were collected during May 2013-November 2014. The study protocol was approved by the Institutional Review Board at the University of Pittsburgh. Eligible participants had to be 18 years or older and have an advanced solid tumor of any kind, with a prognosis of 1 year or less confirmed by a physician or clinic nurse practitioner/physician assistant, and be able to read and understand English at the fourth-grade level. The sample was recruited from two clinics at the University of Pittsburgh Cancer Institute, a National Cancer Institute-designated Comprehensive Cancer Program.

Measurements

Sociodemographic factors. These were measured using an investigator-derived Sociodemographic Questionnaire, a 12-item form that includes variables such as age, race, marital status, cancer type, religion and spirituality, employment status, years of education, health insurance status, and income level.

Cancer-related distress. The NCCN Distress Thermometer is a self-report visual analog scale (0, no distress; 10, great distress) formed in the shape of a thermometer combined with a problem list that is often used in outpatient cancer settings for reporting of cancer-related distress.^14-16 The sensitivity, specificity and convergent validity with the Brief Symptom Inventory and the Hospital Anxiety and Depression Scale have been established and appropriate cut-off score of the distress thermometer identified.^14-16 A score of 4 or above indicates a clinically significant level of distress.^14-16

Symptom distress. The McCorkle Symptom Distress Scale was developed in 1977 based on interviews that focused on the symptom experiences of patients. Psychometric testing among patients with cancer using the modified Symptom Distress Scale revealed high reliability (Cronbach alpha, 0.97).¹⁷ The instrument is a 13-item Likert scale (1-5) assessing the severity of distress experienced by a symptom. Total scores range from 13 to 65, where a higher score indicates greater distress. Moderate distress is indicated with a score of 25-33, and a score above 33 indicates severe distress, identifying the need for immediate intervention.¹⁷

Quality of life and spiritual well-being. The Functional Assessment of Cancer Therapy (FACT-G) is used to assess general cancer-related quality of life. It has four subscales: physical, emotional, social and family, and functional well-being, with a total score that ranges from 0-112, where higher scores show higher quality of life. The Spiritual Distress Well-Being questionnaire was used alongside the valid FACT-G assessment.^18,19 The Spiritual Well-Being Short Form was developed with an ethnically diverse population and adds 12 items to the FACT-G. The items do not necessarily assume a faith in God, allowing a wide flexibility in application and tapping into issues such as faith, meaning, and finding peace and comfort despite advanced illness. Higher scores on the Spiritual Well-Being subscore (range, 0-48) are correlated with higher scores of quality of life. The possible scores for the combined FACT-G and Spiritual Well-Being assessment range from 0-160, with higher scores showing higher quality of life.

Economic hardship. Perceived financial hardship was measured using Barrera and colleagues’ Psychological Sense of Economic Hardship Scale. ²⁰ The scale consists of 20-items broken down into 4 subscales: financial strain, inability to make ends meet, not enough money for necessities, and economic adjustments.²⁰ Economic adjustments in the 3 months before administration of the questionnaire were assessed with 9 Yes or No items, such as added another job, received government assistance, or sold possessions to increase income. The subscale of not enough money for necessities was assessed with seven 5-point scale items in which respondents noted whether they felt they had enough money for housing, clothing, home furnishings, and a car over the previous 3 months. Inability to make ends meet included two 5-point scale items that assessed the difficulty in meeting financial demands in the previous 3 months. Financial strain consisted of two 5-point scale items concerned with expecting financial hardships in the coming 3 months. Scores can range from 20-73, with a higher score indicating worse economic hardship.