Cancer-related financial toxicity among Latinas with breast cancer in a rural area of the United States: a qualitative study

Abstract

Background

Financial toxicity, or the adverse impact of cancer diagnoses on survivors’ financial well-being, is an increasing global concern. In the United States, it is disproportionately high among racial/ethnic minorities. Latina breast cancer patients encounter greater financial burdens than their non-Latina White counterparts, which can lead to discontinuation of medical treatment, poor quality of life, or early mortality. In particular, cancer patients in rural regions are at a greater risk for financial toxicity due to a lack of resources and structural barriers. Despite its magnitude, financial toxicity among Latina breast cancer patients who reside in rural areas is understudied. This study aims to fill this gap by exploring financial toxicity from the perspectives of Latina breast cancer patients, family members, and healthcare professionals.

Methods

This qualitative, cross-sectional study aimed to address this gap in the literature through in-depth interviews with 47 participants, including Latina breast cancer patients (n = 21), their family members/caregivers (n = 14), and healthcare professionals (n = 12), all from a rural agricultural region, with a focus on contributing factors and impacts of financial toxicity. Qualitative data were analyzed using a thematic analysis approach. Demographic data were analyzed using descriptive statistics.

Results

The main themes relating to contributions to changes in patient financial situations included (1) employment disruption (e.g., reduced working hours and quitting the job) post breast cancer diagnosis, and (2) medical-related (out-of-pocket costs, co-payment) and non-medical related financial costs (transportation, childcare). The impacts of financial toxicity were multi-faceted. Patients struggled to meet basic needs (e.g., food, paying bills) and experienced psychological distress. Coordinating patient support care (e.g., transportation, caretaking) to accommodate their financial needs negatively impacted their families’ work schedules and routines. It also affected family relationships, leading to family conflicts, including marital conflict, as well as patients' continuum of cancer care.

Conclusions

Financial toxicity encountered by rural Latina breast cancer patients is complex, and its adverse effects are multifaceted. Culturally appropriate interventions targeting patients and families to address their personal, psychological, and familial issues related to financial toxicity are needed.

Introduction

Cancer care is expensive and can cause financial burdens due to high insurance costs, copayments, and deductibles. Financial toxicity, the adverse impact of excessive financial strain due to a cancer diagnosis and treatment, has become a global concern due to its rippling effects over time. Financial toxicity rates range from 35.5% in high-income counties to 78.8% in low and middle income counties [1]. In 2019, cancer-related patient economic burden in the United States (US) was $21.09 billion, consisting of patient out-of-pocket costs ($16.22 billion) and patient time costs ($4.87 billion) [2]. This burden can lead to excessive medical debt, reduction in assets, and even bankruptcy, causing unexpected negative consequences on quality of life and limiting access to care [1, 3, 4]. With the rising cost of cancer care, high premiums, and deductibles, financial distress is becoming increasingly recognized as a major issue that requires attention and support [4].

Cancer treatment involves both direct costs, such as medical care expenses (e.g., diagnostics, surgical procedures, and medications) and indirect costs, including time off work, reduced productivity, and travel expenses (i.e., gas, meals, and lodging) [5, 6]. Reduced income due to taking time off from work to travel for treatment, childcare expenses, and transportation costs widens gaps in financial toxicity [7]. Increasing drug costs, complex treatment regimes, and frequent clinic visits contribute to higher out-of-pocket expenses for patients. Moreover, “time costs,” or patients spending time for treatment, such as traveling to the clinics, waiting, and receiving treatment, which they are not spent for fulfilling other activities such as working or pleasures, are substantial, contributing to financial toxicity [2].

There are about 4.1 million breast cancer survivors in the US. Breast cancer (BC) incidence among Hispanic women/Latinas is 25.3% lower as compared to non-Latina White (NLW) women [8], yet they are more likely to be diagnosed at a younger age and advanced stage [9, 10], substantially increasing financial costs. Hispanic/Latinx cancer patients are 1.5 times more likely to be hurt financially as compared to Non-Hispanic Whites [11]. Racial/ethnic disparities in cancer-related financial status are attributed to multi-faceted factors, including employment type, insurance status, socioeconomic status, language proficiency, immigration status, and health literacy [12,13,14]. Scholars have found that Latinas with BC, compared to NLW, are more likely to experience job loss [15], leading to income loss and insurance changes [12]. Such challenges are more significant for cancer patients in rural regions due to unique circumstances such as geographic distance from treatment along with limited financial resources [16]. Those from disadvantaged communities are more likely to be underinsured, have limited access to support, and have continued unmet needs [13].

Financial toxicity increases symptom burden and negatively impacts quality of life and mortality [17, 18]. Unmet needs due to financial challenges are significant, leading to psychological outcomes including depression, distress, and anxiety [19]. These problems are mainly due to the worry of high costs of care, payment due dates, insurance coverage, monthly bills, housing costs, and food insecurity [20]. Effective approaches to address cancer disparities require an understanding of contributing circumstances that worsen financial status and their impacts, particularly among underserved Latina BC patients. Despite the significant impact of financial toxicity in BC survivors, most studies of it include primarily NLW, insured, and urban BC survivors [3, 21, 22]. Financial toxicity experienced among underserved Latina BC patients who reside in rural areas is understudied. This qualitative study explored financial toxicity, relating to what worsens the financial situation and its impacts, from the perspectives of Latina BC patients, family caregivers, and healthcare professionals (HCPs) in a rural, underserved region of California, United States.

Methods

Design

This was a qualitative study that used community-based participatory research approaches [23]. In-depth interviews were conducted with Latinas with BC, their family caregivers, and HCPs. Study design and interview materials were co-developed among the study team members, representing academia and a partnering community organization, with assistance from a 4-member Community Advisory Board, consisting of a BC survivor and HCPs (e.g., physician, nurse, financial liaison). The study follows Consolidated Criteria for Reporting Qualitative Analysis (COREQ) guidelines for reporting [24]. All study procedures and material were approved by the San Diego State University Institutional Review Board (HS-2022-0145).

Sampling method and procedure

Purposive sampling [25] was used to recruit the participants. Patients were recruited from a local community organization using the patient database and referrals from local oncology clinics. This organization is the largest non-profit agency in this rural region, primarily serving underserved cancer patients with financial needs. Patients are self-referred or referred from this rural region’s four major cancer clinics. This region is a largely underserved and agricultural region, which has a higher unemployment rate (7.8%) as compared to the US unemployment rate (4.1%) and has a 19.2% poverty rate as compared to 12.0% poverty rate in the state of California. More than half (56.8%) of the residents in this region are Latinx/Hispanic [26]. Eligibility criteria for the patients were: (a) self-identified Latina, (b) age ≥ 18 years, (c) diagnosed with BC within the past five years, and (d) able to provide informed consent. A Spanish-English bilingual study team member screened participants’ eligibility criteria using the patient database and provided the invitation letters to the potential participants via mail or in–person contact when they came to the organization for the services with a follow-up phone call within a week. The team member explained the purpose and procedure of the study as well as the risks and benefits of the study using the IRB-approved invitation letter (available both in English and Spanish). For those with limited English proficiency, the team member went over the invitation letter with them during the follow-up phone call or in-person meeting. Among 29 eligible patients who were provided the invitation letter, six declined for various reasons (i.e., too busy, not feeling well, no interest), and two were rescheduled for an interview but did not respond to any further contact. Total patient sample size for the analysis was 21. The response rate was 72.4%.

An “opt-in” approach was used for the family caregivers. Participating patients were asked to identify their primary family caregivers and their willingness to participate in the study. Eligibility criteria included: (a) family members of Latina BC patients and (b) age ≥ 18 years. Out of 21 patient participants, five indicated having no family caregiver available for the study (e.g., single mom with young children, spouse being ill), four reported their family caregivers were too busy, and one caregiver could not be reached. In total, 11 family members of the participating patients and three additional family members referred from the clinics participated in the study (n = 14). HCPs, including physicians, nurses, social workers, and financial liaisons, were recruited from local oncology clinics and nonprofit organizations serving cancer patients. Eligibility criteria for HCPs included: (1) serving Latinas with BC and (2) age ≥ 18 years. IRB-approved invitation letters were sent to the HCPs followed by a phone call. All approached HCPs participated (n = 12) in the study. The total sample size was 47.

Data collection

Data were collected in person, by phone, or via Zoom from November 2022 to June 2023. All participants were alone during the interview. The study team consisted of seven females (four from the University and three from the community organization), four of whom were fluent in Spanish. Interviews were conducted by four study team members, including a doctoral-level researcher (EK, Asian, English/Korean bilingual speaker) and a bachelor-level research assistant (AV, Latina, English/Spanish bilingual speaker) from academia and an administrator with two master’s degrees (MA, Latina, English speaker) and a staff member (MG, Latina, English/Spanish bilingual speaker) from the partnering community organization. AV and MG, who are English/Spanish bilingual and bi-cultural, interviewed Spanish-speaking participants, and MA and EK interviewed English-speaking participants using semi-structured interview guides.

Interview guide questions were common across the three groups, focusing on (1) contributing factors to patients’ financial hardship and (2) the impacts of financial hardship on patients and families. Sample questions across the groups included (a) How has the patient’s financial status changed after patients were diagnosed with breast cancer? (b) What has contributed to financial challenges? (c) How has your (patient’s) financial situation improved or worsened over time? (d) How have patients’ financial challenges impacted patients and family members? All participants’ socio-demographic information (e.g., age, gender, race/ethnicity), and patients’ cancer and financial toxicity-related information (i.e., time of diagnosis, stage of cancer, and types and consequences of financial toxicity) were obtained. Some participants were known to the interviewers from the community organization. Prior to the interviews, all interviewers were trained by the lead researcher (EK) regarding informed consent procedures, the interview process, and protecting privacy and confidentiality.

Interviews lasted between 50 and 60 min and were conducted in English or Spanish, depending on the participants’ preferences. In this study, 15 patients (71.4%) and three family caregivers (21.4%) were interviewed in Spanish. Interviews were audio-recorded, transcribed verbatim, and translated into English immediately for data analysis. Two research team members (EK and AVG) conducted the data analysis, and data collection ended when theoretical saturation was met in which no new information was being found [27]. In deciding the saturation of the data, EK and AVG also sought out input from the interviewers (AV, MG, MA) regarding their observations on the repetition of the interview contents. Transcripts were not returned to participants for comment or correction. There were no repeat interviews. The interviewers consulted each other to clarify unclear phrases or expressions in the translated versions. If there were discrepancies between the two interviewers, particularly for Spanish interviews, they consulted with another bilingual research assistant (AVG) for clarification. All participants received $50 gift cards for their participation.

Data analysis

For quantitative data, descriptive statistics were calculated to characterize participants’ socio-demographic and health-related characteristics and financial toxicity information. Thematic analysis was used to analyze the data to identify, organize, describe, and generate patterns and themes within the qualitative dataset [28]. Two researchers (EK and AVG) read and re-read the transcripts independently to familiarize themselves with the data. Then, initial codes were generated. The researchers systematically reviewed the entire data set, coding each text segment that addressed the research questions using coding manuals and exemplar text. Then, the initial coding was compared and discussed. If there were discrepancies, a consensus was reached on differences and codes were modified as needed before moving on to the remaining transcripts. Potential themes were then generated and reviewed, compared, and discussed to finalize them and any subthemes.

Trustworthiness of the study

We utilized various methods to ensure the trustworthiness of our study. To establish rapport and enhance familiarity with the target population and subject matter, the researchers engaged with the community over an extended timeframe by attending various community events and meetings prior to the study. The researchers engaged in both formal and informal discussions with cancer patients and HCPs relating to cancer care, allowing for an in-depth understanding of the community’s beliefs, concerns and needs within their sociocultural context. Furthermore, the researchers practiced reflexivity by rigorously evaluating their own biases, assumptions, and preconceptions (e.g., study population, challenges/needs, and interpretation of data) throughout the research process [29]. Triangulation was employed through the integration of field notes, documentation of contextual information from interviews, and participants’ responses [30], which facilitated cross-validation of the findings. To ensure transferability, the researchers provided comprehensive descriptions of the research context, encompassing the study’s settings, population, and procedures. Conformability was achieved through peer debriefing, which involved multiple discussions with fellow researchers and cultural experts within the community [29]. This collaborative review of data interpretations established the accuracy and reliability of the research findings and conclusions.

Results

Participants’ socio-demographic, cancer-related, and financial toxicity information

The average age of the participants was 50.7 (patients), 32.6 (family caregivers), and 46.9 (HCPs) years. About half of the patients (57.1%, n = 12) reported an annual household income of $25,000 (US dollars) or less. Details of the participant’s socio-demographic information are reported in Table 1. Most patients (85.7%, n = 18) reported having reduced work due to cancer care and income loss following their BC diagnosis. The majority (71.4%, n = 15) reported owing money to family or friends and/or cutting down their food spending (85.7%, n = 18). Detailed information about the patient’s cancer-related and financial toxicity information is reported in Table 2.

Table 1 Participants’ (N = 47) Socio-demographic variables

Table 2 Patient participants’ (N = 21) Cancer and financial Toxicity-related information

Qualitative results

Participants identified several common themes, with certain topics emerging more often than others. Financial issues related to medical care emerged more among healthcare providers, while the effects of financial toxicity on psychological distress and family stress and strain were discussed more often among patients and family members.

Contributions to changes in patient financial situations

Qualitative themes relating to what changes financial situations post-BC diagnosis include (1) employment disruption and loss of income and (2) medical-related and non-medical related financial costs impacting financial status. Additional selected quotes are reported in Table 3.

Table 3 Contributions to changes in patient financial situations

Employment disruption

Most participants described employment disruption, including quitting jobs, changing from full-time to part-time employment, or being on disability post-BC diagnosis, which contributed to income loss. Patients employed in physically demanding jobs (e.g., farm workers) had challenges performing work tasks, imposing a greater risk of losing employment. “I used to work 40 hours from the beginning of the grape harvest in April until October or part of November… I haven’t worked for two years now…. with my hand that is swollen. There were times when it hurt a lot… (Patient, 56 YO [years old]). Working in a strenuous environment with high temperatures and physically taxing labor was identified as posing considerable risks to employees’ physical and mental well-being and potentially leading to employment disruptions. “You can’t work out in the fields picking potatoes, harvesting almonds, and things like when it is 100 degrees, and you are on chemotherapy” (HCP 41 YO). Patients’ challenges in maintaining employment arose when their employers made inadequate accommodations for their work schedule to meet their health care needs. Some patients experienced resistance to work-related accommodations from their employers.

I actually had two jobs lined up, but they (employers) ended up telling me that they couldn’t proceed. I had to do a 90-day probation, and my surgery was around the corner, and they couldn’t accommodate it….You know, they [employers] don’t understand the sickness we’re going through, and we’re trying to make money to support our family (Patient, 36 YO).

Sub-populations such as the head of a single household and/or those employed in manual labor jobs were perceived at a greater risk for financial toxicity: “Sole providers have one half of the financial picture for the family. Currently, working moms are at very low-paying jobs. Once you take their income out of the equation, their family can no longer sustain their needs throughout treatment” (HCP, 37 YO).

Medical-related and non-medical related financial costs

• A. Medical related costs

Patients experienced high out-of-pocket costs, co-payments, and deductibles. One patient reported her accumulated unpaid co-pay bills due to multiple tests and treatments:

Well, it is precisely all the expenses resulting from being sick and having to go out for check-ups, sometimes two or three times a week…. That money, I could save or invest in something else…. I have a bill for $2500, which was not covered by the health insurance. (Patient, 50 YO).

Co-payments varied by the type of insurance and treatment. For those who had limited health insurance coverage such as corporation-supported health insurance, their burden for out-of-pocket costs was greater. “…corporations will pay for their [farm workers’] insurance, but their insurance doesn’t cover a huge amount” (HCP, 48 YO). Patients also incurred indirect medical costs, such as paying out-of-pocket for special creams, equipment, and clothing. A patient stated, “With radiation, I had to buy some lotions, and Medi-Cal [state insurance] did not cover. It [Lotion] is to help with the peeling and stuff, but it was a little bit pricey (Patient, 55 YO).

• B. Non-medical related costs

Cancer-related non-medical related expenses (e.g., transportation, childcare, utilities) contributed to the patient’s financial hardship. Concerns about gasoline and transportation expenses were frequently cited by patients and family members, especially for those traveling from rural areas. “I was filling up my car. When gas prices are sky-high, it is up to $120 or $130 a week to go to all my appointments… (Patient, 50 YO).” For patients with limited support, financial strain can be even more difficult. Those who required support with household responsibilities or childcare due to their limited mobility, engaging the services of someone to help them resulted in supplementary expenses.

If you are by yourself, you have to have someone or hopefully a family member to come in. However, if not, you have to pay someone to actually come in and help you with the household chores and just certain daily things (Patient, 50 YO).

Impacts of financial toxicity

Study results revealed the negative consequences of cancer-related financial hardship. These include (1) struggles to meet basic needs, (2) psychological distress, (3) changes in family activities and employment, (4) family stress and strain, and (5) disruption of medical treatment. Additional selected quotes are reported in Table 4.

Table 4 Impacts of financial toxicity

Struggles to meet basic needs

Patients experiencing financial hardship frequently encountered challenges in fulfilling their fundamental necessities, including adequate food, appropriate clothing, and stable housing. Food insecurity emerged frequently, and patients and families employed various coping strategies to make ends meet. Some had to cut expenses on buying groceries, prioritizing only essential items to buy. “Now we have to do it [grocery shopping] every two weeks because we try to manage our food better” (Daughter, 27 YO). Others also had to give up certain high-cost food items such as meat, “I said we would have to make white rice with beans and forget about meat, chicken, and eggs. What a horror!” (Patient, 58 YO).

After depleting their savings, some patients applied and received formal support, such as social security disability benefits, but it wasn’t enough to cover expenses for their necessities. How to manage the deficit in income remained a concern for the future. A patient shared:

You are paying rent and having expenses on necessities, then [the savings] start to deplete… Then they give me the disability [benefit], approximately $30 to $40, $32 for a day. The amount of disability [benefit] is not the same as [the amount] of salary. It was [lower] almost by half.…What am I going to do if the money is not going to be enough?” (Patient, 65 YO).

Psychological distress

Psychological distress was the most frequently described issue among the participants, particularly by patients and family members. In particular, worries and anxiety about unknown situations and their ability to handle financial challenges were prevalent. “How am I going to pay my bills? How am I going to pay for my car and the gas and, you know… I just knew I have to be strong because I was going to get emotional.” (Patient, 36 YO).

The psychological distress of patients had an impact on their families, affecting their emotional and psychological well-being. A family member shared that the patient’s desire to die in her home country caused anxiety for her children, who were concerned about her leaving:

She [patient] doesn’t want me to ask for help [because] she feels ashamed. My wife sometimes told me, “Just let me go.” She even wanted to go to Mexico to die there… And all that affected the children because they saw her [wanting to leave]. The older one was calling her from school all the time. Every now and then, he would call her to see if his mother was home (Husband, 45 YO).

Both patients and family members often refrained from discussing financial hardship and rather endured their struggles in silence due to concerns regarding its potential impact on psychological distress for both parties. “When I was having trouble with money, I would never let her [patient] know. If I didn’t eat, she wouldn’t know. If I didn’t have gas, she wouldn’t know. I wouldn’t tell her because I didn’t want her to be more stressed. So I would take it upon myself” (Daughter, 23 YO).

Changes in the family’s daily activities and employment

With the patient’s financial challenges in hiring formal caregivers, family members took on different caregiving responsibilities, including babysitting, providing transportation, and offering financial support. However, coordinating their own work schedules and daily activities, such as their children’s school schedules, posed challenges for these family members. A participant who had to rely on her older children to take care of her younger children while attending clinic visits reported how it caused disruptions to the children’s school schedules.

I had no babysitter and no one to leave them [young children] with. My other children were in school. It was tough…for example, for today, I had to take my other son out of school to stay with my baby. My child tells me that I have so many appointments and so on. Because I have to take them out of school… (Patient, 41 YO).

Family members’ involvement in patient care caused them to take time off work, reduce work hours, or quit their jobs, resulting in a loss of income. Patients were concerned about the financial impacts of these work schedule disruptions for their families. “Sometimes, my children had to take a day off to bring me [to the clinic] and back. When you get chemo, you can’t drive, and you need that help… For them, it was one day without pay” (Patient, 65 YO).

One caregiver mentioned that her entire family had to modify their work schedules to center around patient care. Family members extended their working hours or sought out additional part-time jobs to mitigate financial insecurity and took time off to help other family members:

We all had to take time off to care for her [patient]. So, my brother-in-law and my dad had to put in some more work. So we were struggling for, what, a year and a half, two years….since my sister needed help [for taking care of mom], I would take off about half the week to help her clean the house, clean up after my mom, make sure they had groceries and help her with her childcare (Daughter, 25 YO).

Family stress and strain

Patients and families reported changes in family dynamics and relationships while navigating cancer-related financial hardship. Some developed a deeper understanding of each other and became more supportive. “I guess it has gotten us closer and more supportive of one another” (Daughter, 31 YO). However, other patients and families experienced family conflicts due to financial stress, and perceived unequal distribution of responsibilities among family members, all of which led to tension and discord in the family. A family caregiver shared, “I sometimes feel like it is uneven. We are like, “Oh, we’re doing more than you,” or “No, I’m doing more than you because I have to go out and work,” or “No, we’re doing more than you because we’re physically, emotionally and mentally dealing with it…” (Daughter, 25 YO).

Participants reported instances of marital tension and discord brought on by financial hardship. Heightened tensions and arguments arose in relation to prioritizing household expenses, such as the payment of bills. Unknown futures and unpredictable situations created a sense of uneasiness and discomfort.

I would say that it [financial challenges] does add some strain to my marriage because there’s so much out of your control. You can’t predict what you’ll need or what time you’ll need it. So now that we are feeling more of the pinch, you know, it does make it harder to be comfortable, be at peace, be happy… (Patient, 40 YO).

Discontinuation or forgoing of cancer treatment

While most patients reported no negative impacts of financial toxicity on their cancer treatment, some patients and HCPs described how financial hardship can cause stoppage/non-compliance to treatment and to routine follow-ups. A patient shared her decision to halt the treatment regimen due to fear of debt and financial burden on her family:

I told Dr. [redacted] that I had no choice but not to undergo the treatment if I already had the cancer spread… I was worried that all the money would be invested in my health and they [my family] would run out of money. I was very sad for leaving them without money, without food, and without a house because we were going to be left on the street because of my illness (Patient, 50 YO).

Some patients engaged in coping strategies to extend their medications due to the difficulty of affording them. An HCP was concerned about how this behavior adversely impacted their progress for treatment:

If you don’t have the money, you’re going to get it when you can. They figure if they can get a little bit, at least they’re getting something. And then, of course, that’s when we go, “oh, you can’t do it that way”. It doesn’t work that way” (HCP, 62 YO).

Discussion

Contributions to changes in financial status

This study found that cancer-related financial toxicity and its negative consequences were multifaceted and negatively impacted various aspects of life, such as treatment options, familial relationships, and psychological well-being. Cancer-related employment disruption was found to largely contribute to financial hardship, as has been supported in other studies. In our study, 14 out of 21 patients had full time employment at the time of diagnosis, but 10 of them reported quitting their jobs and remained unemployed at the time of the interview for this study. Some participants pointed to inadequate accommodations at patients’ work, leading to their employment disruption. A previous study [31] found that racial/ethnic minorities are less likely to be employed in accommodating employment environments, and low-income cancer patients had a lower rate of job retention.

Consistent with previous studies [7, 32], our study also found patients had medical (i.e., co-payment, medical bills) and non-medical related costs (i.e., transportation, food, housing) imposing financial hardship. In particular, those who were in low-wage occupations (e.g., farm workers) had limited health insurance coverage, resulting in high out-of-pocket costs. According to Hallgren and colleagues [33], cancer-related financial toxicity varies by insurance type along with job security. In their study, rural women who had medical debt usually had employer-based private health insurance where patients were responsible for co-pay, deductibles, and out-of-pocket costs. Employers may provide health insurance based on requirements from the Affordable Care Act, although such insurance only requires Minimum Essential Coverage (MEC). MEC plans are commonly offered to field workers but can be insufficient to meet the needs of those with a chronic or debilitating illness such as cancer [34].

Effective January 1, 2024, a new law in California grants adults aged 26 to 49 access to the full range of Medi-Cal (Medicaid) benefits, if they meet the eligibility criteria, irrespective of their immigration status [35]. This is an expansion of the full coverage Medi-Cal program to help cover all ages regardless of immigration status, providing low-cost or no-cost care to those who meet income limits [35]. However, prior to 2024, not all age groups of undocumented immigrants were eligible. The expansion of Medicaid enhanced patient access to healthcare services and significantly decreased the rates of uninsured individuals [36]. However its effects on financial toxicity have not been extensively studied. Future research that investigates financial toxicity across various types of health insurance coverage, along with comparative analyses across different states, can provide valuable insights for policy and practice implication. Nevertheless, such changes in health insurance coverage highlight the importance of financial navigation programs providing assessment, education, and guidance for applying or changing health insurance to reduce treatment cost-related burdens.

Notably, transportation costs were one of the most commonly cited indirect costs. In this study, one-third of the participants reported traveling more than 50 miles roundtrip (average of 65 miles) between the clinic and their home. Patients’ “time costs” in traveling to and from and waiting for the evaluation and treatment are significant and need to be taken into consideration for estimating financial toxicity [2].

Effects of financial toxicity

The adverse ramifications of financial distress had an array of aspects: physical, psychological, social, and medical. Participants across all three groups pointed out challenges in patients meeting basic needs, particularly food insecurity. A previous study [33] found that rural cancer survivors who had challenges meeting basic needs were financially insecure before their cancer diagnosis, had public health insurance, and also experienced employment disruption during cancer treatment.

The observed implications of financial toxicity were not limited to material deprivation alone. In addition, there were noticeable psychosocial impacts associated with it, which are consistent with previous findings [7]. Patients and family members in this study reported their efforts to conceal their concerns from one another as a means of protection; however, this avoidance may in fact exacerbate their overall distress. Therefore, a comprehensive evaluation of both patients and family members such as via distress screening [37, 38] is necessary to identify any psychosocial distress and recognize their needs in addressing concerns. The screening should facilitate comprehensive intervention to alleviate distress.

Another psychosocial ramification of financial distress was the impact on family routines and activities. In this study, family members had changes in their routines and activities which were mainly driven by the patients’ caregiving needs but became complex with their financial challenges. Caregiving roles extended to school-age children who sometimes were expected to babysit younger siblings during school hours, which in turn negatively impacted their academic performance and psychological well-being, as observed by their parents. Children within the family unit may be particularly vulnerable to the psychological impact of financial toxicity, which would require close attention to children’s emotional states and connecting with counseling services.

The finding that finance-related challenges impacts family relationships both positively and negatively can be best understood within the context of familismo, a central Latinx cultural value. Familism, which is expectations and obligations to provide family support, can positively impact on caregiver stress when the family is perceived as a source of support [39]. However, strong cultural expectations requiring obligations to provide support and expected behaviors and attitudes that need to be followed by different members can contribute to caregivers’ stress [39]. In addition, social support plays a significant role in reducing adverse psychological caregiving outcomes [40]. Hence, family members who perceive a lack of support or failure to meet expected roles may contribute to family discord and tension.

HCPs particularly voiced their concerns about the negative impacts of financial toxicity on cancer care (e.g., delay or non-adherence to the treatment, modification of the medication dosage) among their Latina BC patients. Similarly, previous studies found that Latinx cancer patients are less likely to have insurance [11] and have limited coverage for prescription drugs [41], leading to forgoing medication due to cost [42]. It is worth noting that 77% of the patients in this study had Medi-Cal insurance at the time of the interview. However, it is possible that some patients with inadequate or no health insurance may have switched to Medi-Cal upon their breast cancer diagnosis.

Practice implications

The impact of financial toxicity on Latina BC patients and their families is significant, necessitating the multi-dimensional assessment of financial hardship and implementation of systematic and culturally appropriate interventions. Particular attention should be paid to the unique circumstances of financial challenges, such as structural barriers (e.g., geographic distance, limited health insurance coverage, low-wage jobs, physically demanding jobs), among rural Latina BC patients [33]. In our study, transportation costs were identified as a significant concern. A variety of strategies have been developed to mitigate transportation insecurity. For example, transportation network companies like Uber and Lyft have partnered with insurance companies and paratransit providers to offer flexible and reliable non-emergency medical transportation services [43]. In some rural communities, volunteer transportation programs have been created and run as a cost-effective and adaptable alternative for residents. These programs have demonstrated a positive effect on individual health outcomes, as they facilitate timely access to medical appointments and alleviate feelings of burden associated with relying on others for transportation [44]. In addition, it is important to consider healthcare system-related changes, including consolidating clinic visits, to reduce the appointment burden on patients and their caregivers. Financial navigators who can effectively identify, connect, and coordinate these services will be essential in reducing transportation barriers for patients.

Effective financial interventions might begin with exploring the patient’s financial coping strategies. While the existing literature mostly focuses on financial sacrifice (e.g., reducing payment), rural cancer patients may engage in other strategies, such as payment plans or payroll deductions [33]. Providing patients with financial counseling and education about their treatment costs, insurance coverage, and available financial assistance programs can empower them to make informed decisions and better manage their expenses [38]. Nevertheless, those who struggle to meet basic needs and are unemployed may require additional support beyond the payment plan. Consistent implementation of screenings using screening tools and tracking is important to identify the patients at risk of financial toxicity and provide timely resources [45]. Additionally, HCP’s initiation of early discussions about the costs of care, including out-of-pocket costs and indirect costs, can be important to identify and intervene to mitigate financial burdens. However, not all patients might wish to talk about the treatment costs, and some patients have concerns about cost conversation potentially leading to a negative impact on their cancer care delivery. Thus, strategizing cost conversation considering when and how to approach such conversation is needed [46]. It is also crucial to consider the patient’s potential language barriers, health literacy, and immigration status, which limits their access to financial assistance. Culturally- and linguistically-concordant services can help patients and family members navigate the often complex landscape of health care and receive their supportive care needs [47]. Moreover, the study findings uncover the negative impacts of financial toxicity on patients’ and the family’s psychological well-being and functioning. This highlights the importance of assessing and providing accessible and flexible psychological services, including family-based interventions. Psychosocial interventions, such as problem-solving approaches and group and family support focusing on stress management, resilience-building, and enhancing coping strategies, can be helpful in reducing psychological distress [48].

Limitations and future directions

This study has several limitations to address. The study recruited patients mainly from one organization and in a specific geographical region. Although this was the largest organization serving cancer patients with financial hardship in the region, future studies should expand study sites in order to improve representativeness. Another limitation is selection bias which may limit the generalizability of our findings. All study participants were insured, with the majority of them having Medi-Cal, or expanded Medicaid. Financial difficulties are likely to be more significant for immigrants who lack health insurance or are underinsured. Additionally, rural cancer patients in other states who do not have an expanded Medicaid program may have difficulties affording health insurance through the Affordable Care Act and become uninsured. Future studies that include more representative samples would enhance the generalizability of the study results. In addition, it would be beneficial for future studies to explore changes in financial toxicity over time. Although it may persist during and post treatment, financial toxicity is relatively high within a year from the diagnosis, and it improves as time goes by, but it may exacerbate after the 5-year mark [49]. Examining financial toxicity and its contributing factors over multiple time points can help develop effective interventions.

Summary and conclusion

Financial toxicity experienced by underserved Latina BC patients is complex. It involves systemic and structural challenges, such as low wages, immigration status impacting health insurance coverage, and inflexible work environments, leading to an unavoidable loss of income. The impact of financial toxicity is profound, causing challenges to meeting basic needs and negatively affecting psychological well-being and family relationships and dynamics. The deleterious effects of financial toxicity are not limited to individuals alone but extend to their families as well. This is particularly salient among the Latinx culture, where the cultural values of familism are deeply entrenched. These issues call for the importance of systematic interventions targeting both patients and family members. Regular and systematic screening for financial toxicity and culturally and linguistically concordant intervention considering structural, social, and culturally unique circumstances is critical to meeting their needs to reduce financial distress effectively.