Perceived Economic Hardship and Distress in Acute Myelogenous Leukemia

June 2017 Vol 8, No 6
Tara Albrecht, PhD, ACNP-BC, RN
Virginia Commonwealth University School of Nursing, Richmond, VA
Justin E. Bala-Hampton, DNP, MPH, RN, AGACNP-BC
School of Nursing, University of Pittsburgh, Pittsburgh, PA
Linda Dudjak, PhD, RN
School of Nursing, University of Pittsburgh, Pittsburgh, PA
Margaret Q. Rosenzweig, PhD, FNP-C, AOCN, FAAN
University of Alabama at Birmingham
Birmingham, AL

Background: Multiple studies have quantified the direct and indirect costs and related patient hardship and distress in general cancer care; however, little attention has been focused on a particular cancer with great potential for economic hardship, acute myeloid leukemia (AML). The purpose of this study was to explore the concept of perceived economic hardship and economic distress among a cohort of adult patients at least 6 months postdiagnosis of AML.

Methods: A cross-sectional assessment of adult patients 6 months postdiagnosis of AML currently receiving outpatient treatment at a National Cancer Institute–designated cancer center was conducted. Three surveys were utilized to assess the patients’ perceived financial toxicity: the Comprehensive Score for Financial Toxicity-Patient Reported Outcome Measure (COST-PROM), used to measure economic distress; the University of Pittsburgh School of Nursing Demographics Questionnaire; and the Measure of Economic Hardship used to assess a specific measure of economic hardship. Paper surveys were offered to eligible patients upon arrival for routine follow-up visits, and participants were asked to complete the survey in the waiting room prior to the clinician visit or in the treatment room while receiving treatment.

Results: The survey was completed by 26 of 32 eligible patients. The sample was equally divided in gender and included a majority of participants who were insured and well educated. Patients with AML reported higher levels of economic hardship and distress compared with other cancers. Only age (not insurance or income) was correlated with economic hardship or distress. Race was correlated with inability to meet bills. Perceived economic hardship was significantly correlated with economic distress.

Discussion: To help ensure optimal benefit from CML therapy, it is essential to develop and evaluate interventions that foster patient-clinician communication and referral for services related to both financial need and psychosocial distress.

Conclusion: These results suggest that perceived economic hardship and subsequent distress are present among patients with AML. Both economic concern and distress appear to be unrelated to income or insurance.

The treatment paradigm for acute leukemia is very different than the outpatient chemotherapy provided for many solid tumors. Patients with acute myeloid leukemia (AML) require a minimum 4-week inpatient admission for their first induction therapy and are then readmitted for at least 5-days over several subsequent months for consolidation therapy.

AML is considered one of the most expensive cancers to treat, including treatment costs and the cost of short- and long-term treatment complications.1 The economic hardship from the diagnosis and treatment has become increasingly acknowledged in the literature.2,3 Furthermore, although it is estimated that the Affordable Care Act (ACA) will increase coverage for more people, individual costs may become more of a burden through higher insurance deductibles.4,5 Even with the ACA, those with coverage still encounter the threat of medical-related economic hardship.6,7

Although the costs of leukemia care may be covered by healthcare and disability insurance, there are other burdens of treatment that are not directly covered or addressed, including, but not limited to, loss of income, depletion of savings, canceled plans, and overall stress to the individual and their family. The 2014 US Census Bureau indicates that the median US household income was approximately $53,657 in 2014. 6 In a study by Shankaran et al, patients with colon cancer were in debt by $26,860 on average due to treatment-related expenses. Depending on the AML treatment regimen, costs incurred by the patient can exceed $30,000 for chemotherapy alone.8,9

The economic hardship of cancer care can significantly affect an individual’s quality of life and their subsequent treatment.10 Barrera et al defined economic hardship as the degree to which individuals experience distress as a result of an imbalance between appraised needs and available resources.11 Although past studies have investigated topics related to economic hardship, these studies have primarily addressed institutional and payer concerns and have not focused on the patients’ perspective.10,12,13 Additionally, studies have looked at the impact of a population’s demographic makeup on the perception of economic hardship and distress in patients with cancer. Often age, race/ethnicity, time to diagnosis, healthcare insurance type, and socioeconomic status have an impact on the degree of economic hardship experienced.14 Does the perception of economic hardship or distress based on the demographics of the patient affect patient symptomatology and outcome? Yabroff et al14 found that economic hardship is prevalent for both “material” and “psychological” economic hardships and that these hardships are associated with poorer health outcomes and quality of life. However, to date, minimal research has explored how perceived economic hardship affects distress in hematologic malignancies, more specifically AML. This study explored the influence of sociodemographic variables on perceived economic hardship and distress and the impact of perceived economic hardship on economic distress among a cohort of adult patients at least 6 months postdiagnosis of AML.


Definition of Concepts

Many terms have been used to describe perceived economic well-being and economic distress.8,12,15 In oncology literature, distress, hardship, burden, and toxicity are often terms used synonymously. For clarity, this study utilized the economic hardship assessment developed by Barrera et al, including their definition of perceived economic hardship, which is the awareness of insufficient resources often accompanied by behavior to attempt to cope with financial demands.11

Although distress has been used as an outcome measure in the literature, there is not a clear definition of the concept.16 The National Comprehensive Cancer Network (NCCN) defines distress as a “multifactorial unpleasant emotional experience of a psychological (ie, cognitive, behavioral, and emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment….” Additionally, for the purpose of this study, economic distress was measured using De Souza et al’s definition, ie, the degree to which economic hardship or toxicity impacts the lives of patients living with cancer.10,17 Therefore, we will be utilizing the term “perceived economic hardship” in this study to encompass the definitions of Barrera et al and De Souza et al.

Lastly, this study used the World Health Organization’s definition of social determinants of health as the conditions in which people are born, grow, live, work, and age that impact their health. A model was created depicting how the social determinants of health for those with AML influenced economic hardship and cancer-related economic distress (Figure). 

Perceived Economic Hardship and Distress in Acute Myelogenous Leukemia

Study Design

A cross-sectional descriptive analysis was developed investigating adult patients 6 months postdiagnosis of AML currently receiving outpatient treatment at the UPMC Shadyside Hospital/Hillman Cancer Center. Patients were recruited for 6 months from June to December 2015. The clinic nurse performing recruitment was first educated regarding the nature of the study and the inclusion and exclusion criteria. The inclusion criteria were: living with an AML diagnosis for longer than 6 months, being over the age of 18 years, receiving active outpatient treatment, and being able to speak and write English.

Three questionnaires were utilized: the University of Pittsburgh School of Nursing Demographics Questionnaire measuring the social determinants of health, the Comprehensive Score for Financial Toxicity-Patient Reported Outcome Measure (COST-PROM) from De Souza et al, and the Economic Hardship Measure from Barrera et al. The University of Pittsburgh School of Nursing Demographic Questionnaire consists of 9 items (age, race, gender, insurance type/status, education, employment status, gross annual income, cancer type) and was specifically developed for patients with cancer. The COST-PROM measure is an 11-item patient- reported outcome measurement tool developed for patients with advanced malignancies. It has been adopted as a standard patient-reported outcome measure (PROM) at the National Cancer Institute for the reporting of financial distress among patients and families dealing with cancer. It provides an economic toxicity score ranging from 0 to 44, with lower values indicating greater economic toxicity and higher values indicating lesser economic toxicity. The COST-PROM measure demonstrated face and content validity as well as internal consistency and has been tested with lymphoma and multiple myeloma patients.2,10,18

Perceived economic hardship was measured using the Economic Hardship questionnaire from Barrera et al. This is a 20-item questionnaire consisting of 4 subscales: financial strain, basic necessities, economic adjustments, and ability to meet bills. The 4 subscales create the total score, with a higher score indicating worse hardship, and a lower score indicating greater ease. This questionnaire has been used primarily to measure perceived economic hardship among urban families, but it has also been used to effectively measure economic hardship in other populations, especially in the family and caregiver oncology population.11 Individual scores are summed to yield an overall score for each of the 4 subscales, including a total score.

Data Collection

This study was approved by the University of Pittsburgh Institutional Review Board (Pittsburgh, PA) as an exempt review. All study participants provided written informed consent prior to answering the questionnaires. Eligible patients were informed of the study and recruited on arrival for their routine follow-up visits, and participants were asked to complete the survey before or after their visit to the clinic in a private setting. The surveys took 10 to 15 minutes to complete, and patients could complete the survey only once. Survey responses were coded and entered into a study database and were rechecked to assess internal validity.

Descriptive statistics were used to summarize patient-level sociodemographics and survey responses. Means were calculated for all continuous variables. Further analysis of correlations between patient characteristics and COST-PROM scores was performed using linear regression. Statistical analyses were 2-tailed and performed with SPSS version 23 software.



The study was conducted from June 1, 2015, through December 1, 2015. Of the 32 eligible patients approached to participate in this study, 26 participants completed the surveys, and 6 patients refused. The most common reason for refusal was lack of time. The population sampled was largely white (80.8%), married (80.7%), highly educated, with a mean age of 58.5 years (SD 14.1), and the majority had annual incomes over $50,000/year (Table 1). 

Perceived Economic Hardship and Distress in Acute Myelogenous Leukemia

Perceived Economic Toxicity and Perceived Economic Distress

Scores on the COST-PROM instrument ranged from 2 to 37, indicating a range of great financial toxicity to minimal financial toxicity. The COST-PROM data were then collapsed into 2 groups (“toxic” and “nontoxic”) due to the small cell sizes in some of the responses and due to the small original sample. These 2 groups were formed using the dichotomous selection of Somewhat, Quite a Bit, and Very Much (toxic group) versus Not at All or A Little Bit (nontoxic group) from the COST-PROM questionnaire. Based on the COST results, 69.2% (n = 18) of the respondents did not have enough money to cover the cost of treatments, and 65.4% (n = 17) stated that their out-of-pocket expenses were greater than they had expected. Three-quarters (n = 20) of the study population had increased financial worry related to their diagnosis, and 85% (n = 22) felt they had no choice in the cost of the care received. Sixty-two percent (n = 16) of the participants felt that they financially could not do what they used to, and 73% (n = 19) were not satisfied with their finances. Additionally, 69.2% (n = 18) of the patients felt financially stressed, 62% (n = 16) stated that their stress derived from their cancer treatment, and 85% (n = 22) felt they were not in control of their finances (Table 2). Results indicated that the cohort had perceived economic hardship (ie, the higher the score in each section, including total score, the worse the perceived hardship) in the areas of Economic Adjustment (15.1; SD 3.2) and Income Meets Basic Needs (19.8; SD 8.6), and an overall score (range, 20-83) of 45.3 (SD 8.0) (Table 3). 

Perceived Economic Hardship and Distress in Acute Myelogenous Leukemia 

Perceived Economic Hardship and Distress in Acute Myelogenous Leukemia

Sociodemographic Factors and Economic Hardship

Pearson correlation was conducted to determine the relationship between the sociodemographic variables and economic hardship. Of the 9 sociodemographic factors measured, 3 significant correlations to economic hardship were found: age (P = .04), basic necessities (P = .04), and economic adjustment (P = .01); race only correlated with the ability to meet bills (P = .02) (Table 4). However, no significant correlations with any other sociodemographic factors and economic hardship were found. Additionally, an analysis of the relationship between sociodemographic variables and economic distress (COST-PROM) revealed no significant correlations between sociodemographic variables and economic distress. 

Perceived Economic Hardship and Distress in Acute Myelogenous Leukemia

Economic Hardship and Economic Distress

There is a strong correlation between the 3 subsets of economic toxicity and economic distress. The COST score range is 0 to 44; the higher the score, the better the perceived financial well-being. The results showed COST scores as a continuous variable were strongly associated with economic adjustment, hardship, and economic necessity, (P = .010). The sample was dichotomized according to the median score of 17 on the COST. Patients who scored 17 or lower (worse) on the COST had significantly more total economic hardship than those with higher (better) scores on the COST. Based on the median COST score, the total mean economic hardship scores were 49.6 (SD 6.5) for scores lower than 17 and 40.9 (SD 7.1) for scores higher than 17, which was a statistically significant difference (P = .019) (Table 5). 


This study measured social determinants of health, the degree of perceived economic hardship and economic distress, and explored the relationship between them as experienced by patients with AML. The results of the cross-sectional study showed that perceived economic hardship and perceived economic distress were not correlated with income. These findings also showed that the level of perceived economic distress in patients with AML is higher than what is reported in the literature among other hematologic malignancies.2 Patients who reported worse economic distress indicated greater economic hardship compared with current literature. In a study by Huntington et al,2 patients with multiple myeloma had a median score of 23 (SD 11.1) as determined by the COST instrument.

The current literature has provided evidence that economic hardship of cancer care in the United States continues to be a growing problem for all patients, providers, and insurers. Findings from a recent 2015 article by Delgado-Guay et al showed financial distress was very prevalent (90% of cancer patients) and was more severe than physical distress, distress about physical functioning, social or family distress, and emotional distress.19 Schippner et al state that “in clinical decision making between physician and patient, the direct cost to the patient is clearly paramount.” Considering the recent literature addressing patient perspectives and the clinical advancements of treatment and unsustainable increases in the cost of care, economic hardship and distress should be expected to emerge as an increasingly relevant clinical problem.20 However, there is still a need for more literature addressing the patient’s perspective and the effects of economic toxicity on clinical outcomes with AML.

Economic hardship and distress can have far-reaching implications for the delivery of high-quality cancer care. Whether insured, uninsured, or underinsured, individuals may still face significant barriers to obtaining adequate healthcare coverage. Patients seen at referral centers for inpatient stays may not have access to outpatient clinics or may not be accepted by some physician practices unless they have specific coverage or are able to pay the full cost at the time of the visit, thus limiting the treatment options available.

Resources are needed to enable patients and physicians to include assessment of perceived economic hardship in their regular visits. Further research is needed to evaluate how perceived economic distress impacts cancer outcomes in a larger multicenter study. Once the distress is clearly articulated, there can be testing of interventions mitigating the effects of economic toxicity. In healthcare, and specifically in cancer care, social determinants of health such as race, income, and education have been associated with poorer outcomes (delay in treatment, late diagnosis, and/or inability to access or complete care).8,12,15,21 However, these results suggest that every patient is vulnerable to the effects of economic burden in cancer care. Economic distress as a result of a cancer diagnosis might be considered comparable to physical symptomology (depression, anxiety, panic, social isolation) and can be as disabling as any significant variable that should be studied in guiding cancer management.16,17


The study is limited by its small sample size of 26 participants recruited solely from the outpatient clinics of UPMC Hillman Cancer Center serving the Pittsburgh and western Pennsylvania/West Virginia region. The majority of participants in the sample were white, married, with incomes above $50,000, resulting in the potential for a homogenous study sample. This narrowness may limit generalization. Furthermore, it is possible that economic distress and hardship of patients living in this area may differ and vary from those in other hospitals/clinics and areas of the country.

Implications for Clinical Practice

Unlike most solid tumor treatment, leukemia treatments require multiple sequential acute care admissions, and possibly long and frequent periods of isolation from support systems. Economic toxicity during cancer treatment is now recognized as adversely affecting quality of life, medication adherence, and possibly even survival.1,2,20,22 Quality cancer care should provide financial resources and assessment alongside treatment of AML. Clinicians should consider implementing financial planning services through nurse navigation and social work at diagnosis to alleviate an individual’s concerns over economic resources. It would be appropriate to assess patients’ perception of economic hardship through the integration of the COST instrument in both outpatient and inpatient settings to identify and better support patients at risk for economic toxicity and perceived economic hardship. Therefore, there is a need for an interdisciplinary team to mitigate economic hardship navigating through follow-up and readmissions along with various other health concerns. Continuous communication with patients is needed to address their cost concerns.


Perceived economic hardship may play a vital role in the care of patients with AML. Although research has often explored treatment and prognosis, there is limited information on the part economic concerns play in the diagnosis and treatment of AML. Additionally, there is little information available in the existing literature that discusses the role of a patient’s economic toxicity for AML and how these economic toxicity conversations are initiated between a patient and their care staff. This study provides a snapshot of the impact of patients’ perceived economic toxicity; however, more research in this area is needed to effect future care decisions.

Conflict of Interest

The authors declare no conflict of interest.


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