This prospective observational study was conducted over 12 months, from October 1, 2022, to October 30, 2023, at Montefiore Medical Center in Bronx, New York. The study took place in both outpatient and inpatient hematologic oncologic units of the Montefiore Cancer Center, a quaternary academic center serving a predominantly low-income, racially and ethnically diverse population.

Eligible participants included adults over 18 years old with a HM (ie, acute or chronic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, or multiple myeloma) who either received a new diagnosis or were being evaluated for cellular therapy (CT), such as autologous or allogeneic stem cell transplantation (SCT) or chimeric antigen receptor T-cell (CAR-T) therapy.

Patients were excluded if (1) they were being seen for conditions other than HMs, (2) they were seeking a second opinion after treatment at a different institution, (3) they presented after recurrence ineligible for autologous or allogeneic SCT and CAR-T therapy, (4) they were being evaluated for a second autologous SCT as part of tandem autologous transplantation or for recurrent myeloma, or (5) they lacked capacity or were non-English or non-Spanish speakers.

Recruitment took place during routine clinical visits and on the oncology floors. Eligible patients were identified by treating providers or study personnel and were invited to participate on a rolling basis. Participants were divided into two cohorts: (1) newly diagnosed (ND) and (2) undergoing CT (SCT or CAR-T).

Data were collected in person at three time points: baseline (day 0), day 30, and day 90. At each time point, the participants completed two instruments:

Data analysis was performed using SPSS version 29 (IBM Corp). Descriptive statistics summarized demographic characteristics and COST-FACIT scores. Frequencies and percentages were calculated for categorical variables, while medians and IQRs were used for continuous variables. Comparison of the severity of FT across the timelines was determined using the Friedman test. The Mann-Whitney U test and Kruskal-Wallis H test were used to examine significant differences in FT with respect to sociodemographic groups. Linear regression analysis identified sociodemographic predictors of FT. A two-tailed P value of <.05 was considered statistically significant. No adjustment for multiple comparisons was made due to the exploratory nature of the study.

Over a period of 12 months, we recruited 90 patients who met eligibility criteria and consented to the study. The sociodemographic characteristics of these participants are shown in Table 1. Fifty-two of 90 (57%) patients were ND, whereas the rest (n=38, 43%) were either currently receiving or preparing to receive CT. The median age was 59 (IQR 44-66) years. There were more male patients (n=56, 62%), 24 (27%) patients were African American, and more than half (n=48, 55%) were Hispanic. Over 60% (n=55, 63%) of the participants were not employed, and over a third (n=33, 37.1%) were on Medicaid. Regarding HMs, most patients had plasma cell dyscrasias (n=33, 37%) compared to other HMs.

A linear regression analysis was performed (Table 5) to identify potential predictors of FT, as measured by the continuous COST-FACIT score. The model incorporated sex, race and ethnicity, insurance status, employment, and type of malignancy as independent variables. Among individual predictors, race and ethnicity were the only statistically significant predictors, which were associated with a 3.08-point lower COST-FACIT score, indicating higher FT in this group (B=−3.08, P=.04, 95% CI −6.047 to −0.121). The other variables—sex, insurance status, employment, and malignancy type—were not significantly correlated with FT.

Our social workers evaluated more than 75% of the patients in our survey at the time of diagnosis. Over a third (n=32, 37%) of our patients were employed, while more than 60% were retired, disabled, or unemployed (Table 1). Table 6 and Figure 2 show the results of our investigator-based questionnaire. Most patients reported financial difficulties in carrying out their daily activities, such as paying for food, heating/air-conditioning, or warm clothes over the past 6 months (ND group: n=28, 54%; CT group: n=23, 61%). Additionally, over half of the patients experienced some degree of emotional distress in their daily lives (ND group: n=29, 57%; CT group: n=18, 48%). About 15% in the ND group and 26% in the CT group delayed seeking medical care due to financial constraints, and only about 10% missed appointments due to caregiver issues.

Regarding transportation, the median distance from patients’ homes to the treatment center was 5.8 km in both groups. Although fewer than 20% missed appointments due to lack of transportation, many expressed concerns about the cost and accessibility of transportation to their medical appointments (ND group: 52% on day 0; CT group: 47% on day 0). Interestingly, many patients showed interest in telemedicine alongside in-person visits (ND group: 53% and CT group: 40% at day 0). We examined differences in social factors and subjective experiences of FT by ethnicity, and no statistical difference was found at day 0 in either cohort.

Our pilot study highlights a high prevalence of FT within the study population, affecting over 70% of participants. While no significant differences in FT were observed between patients ND and those undergoing CT, those in the CT group had significantly worse FT at day 90 compared to baseline (day 0). Race and ethnicity emerged as significant predictors of FT, with African American and Hispanic patients experiencing greater FT compared to non-Hispanic White counterparts. Although most patients could attend their oncology appointments and receive treatment, over one-third expressed concerns regarding access to transportation and associated costs.

Our findings are consistent with a growing body of literature that identifies FT as a persistent and complex challenge in cancer care [14]. Our patients in the CT group experienced worse FT over time, similar to a previously published study on CAR-T therapy [15]. The study by Maziarz et al [16] on health care costs in patients receiving allogeneic transplants reported that the median cost of health care for a patient receiving a transplant was over US $300,000. Apart from the high cost of SCT and CAR-T, prolonged hospital stays and multiple hospitalizations from treatment-related toxicities add to the burden of FT in these patients [17,18].

In addition to direct medical costs, indirect expenses—such as transportation, loss of employment from poor productivity due to illness, or switching to low-income jobs because they are less physically demanding—also add to the burden of FT [19,20]. Our study confirms these findings. In our study, although most patients made their oncology appointments, over a third were worried about access and the cost of transportation to attend them. Patients undergoing scheduled chemotherapy infusions need to make multiple visits to the clinic, which can be burdensome, especially for those in the CT group who must travel long distances to a FACT (Foundation for Accreditation of Cellular Therapy)-accredited center. This increases gas and public transportation costs, ultimately increasing the overall treatment cost burden [21,22]. Insurance coverage, while protective, may be insufficient to offset the rising costs. Increased deductibles, co-payments, and coinsurance have shifted much of the burden to patients, leading to substantial out-of-pocket expenses for their cancer care. Our study did not assess these out-of-pocket costs directly, nor did it quantify medical debt, areas that merit further investigation.

We found that race and ethnicity are significant predictors of FT, with African American and Hispanic patients experiencing worse FT than non-Hispanic White patients. Our results do not differ from studies on race and cancer-related FT in the literature [23-25]. Most of our patients are essentially racial and ethnic minorities and immigrants, and some are undocumented. They are likely to have lower incomes compared to their White counterparts, to be in the lowest socioeconomic tier, and have access only to public health insurance with limited coverage or even be uninsured [26-28]. Additionally, these patients are likely to have lower health literacy, leading to late disease presentation, increasing the intensity and cost of treatment. These findings underscore the structural inequities that contribute to FT among racial and ethnic minorities and immigrant populations. The convergence of social, economic, and health care–related factors amplifies financial strain and perpetuates disparities in outcomes. Addressing FT in these populations will require more than individual-level solutions; it demands systems-level change.

Beyond the direct effects of FT, it also encompasses the subjective financial distress—the emotional and psychological toll of economic strain [2,29]. This includes the depletion of household wealth and nonmedical budgets, as well as worries about the effectiveness of coping strategies [30]. In our study, over half of the patients experienced financial difficulty in paying for basic needs such as food, and more than 50% experienced emotional distress in their daily life, aligning with findings from Yu et al [31]. Although our results indicate a substantial emotional burden, further research is needed to determine whether this stems from receiving devastating news of a cancer diagnosis, the financial burden of treatment, or a combination of both. In our study, where over 50% of patients are unemployed, most of them will likely have to adjust their monthly budget and spend less on basic needs to pay for their cancer treatment. As their cancer treatment progresses, which is often prolonged in HM, they may face increasing financial burdens, leading them to adopt coping strategies such as relying on retirement savings, selling valuables, or borrowing from friends, family, or financial institutions [32]. In some cases, patients may resort to maladaptive strategies such as missing hospital appointments, medication nonadherence, or even stopping treatment entirely [33]. In our study, though a few patients missed or delayed treatments due to financial constraints, we see a decrease in the number of patients when followed up on day 30 and day 90. Although only a few patients in our study reported missing or delaying treatment due to financial constraints, we observed a decline in patient follow-up at 30 and 90 days. While the reasons for this attrition are not fully elucidated, the inability to afford ongoing treatment remains a plausible factor. These strategies may temporarily mitigate the financial impact of cancer care but ultimately lead to reduced quality of life, emotional distress, and devastating clinical outcomes.

Our study certainly has limitations. First, we had a low sample size, especially at the 90-day time point, as many of our patients were lost to follow-up, deceased, or chose not to continue with the study. Second, although our study was observational, the follow-up period may not have been long enough to detect a significant change in FT across time. Third, we did not collect data on the participants’ monthly income and the number of cycles of chemotherapy received at each survey time. This may have provided additional insights into assessing the severity of FT in our patient population. With our pilot study, we aimed to capture some of the barriers to cancer care in a unique patient population.

Mitigating the burden of FT will involve developing and implementing intervention strategies at multiple levels, from the state/national level to the health insurance/payer, hospital, and provider levels [34]. In our study, many patients were worried about the transportation cost to their oncology appointments but were open to telemedicine visits. Therefore, incorporating telemedicine visits as an option in the care of our patient population could offer more flexibility for patients, reducing the travel burden and lost income from missed work [35]. Most of our patients were assessed by a social worker. While they play a role in identifying patients at high risk of financial distress, their assistance may not be sufficient, and they may not have the expertise to provide solutions to mitigate the severity of FT. A dedicated financial navigator, especially in a quaternary academic medical center, is required to help patients understand the economic aspects of their cancer care, budget appropriately, and maximize their employment and disability benefits in the context of ongoing financial commitment [36]. A larger cancer center–wide study is underway to evaluate the social determinants of health and better understand their implications on patient outcomes.

This study highlights the significant and far-reaching impact of FT experienced by patients with cancer, particularly those from socioeconomically disadvantaged and ethnic and racial minority backgrounds. Our findings underscore the need for early FT screening and multilevel interventions to protect vulnerable populations from economic harm during cancer care.