Navigating Dual Burdens: Financial Burdens and Travel Burdens Among Rural-Dwelling Cancer Survivors

Abstract

Introduction

Financial toxicity (FT) is more prevalent among rural-dwelling cancer survivors who also face greater cancer care-related travel burdens. We sought to examine how FT and travel burdens may pose dual burdens for cancer survivors, and assess their effects on care experiences and subsequent cost-coping strategies.

Methods

Rapid qualitative analysis of semi-structured interviews with rural-dwelling cancer survivors who screened positive for FT per the COmprehensive Score for financial Toxicity (COST) measure. Our analysis was structured around three inductive themes: rural-dwelling patients’ experiences of cancer treatment while navigating FT, patient perceptions of travel burdens undertaken in the course of accessing cancer care, and perceived implications of both FT and travel burdens for care on HRQoL.

Results

The (n = 12) participants in our study were mostly women, with a median age of 60.1. The median COST score was 9.5, indicating a high degree of FT, and the median round-trip travel distance was 25.6 miles. Participants reported cost-coping strategies to reduce travel-associated costs, such as “stacking” appointments to reduce travel costs and taking advantage of non-medical assistance offered by health systems’ financial assistance programs (e.g., gas cards). Participants also reported shared burdens with caregivers who also shouldered costs.

Conclusions

Estimates of travel distances to cancer care likely understate travel burdens, because they do not capture the frequency of appointments and their associated indirect and opportunity costs for cancer survivors experiencing FT. Financial assistance for cancer survivors should be responsive to the dual and cumulative financial and travel burdens of cancer care.

Plain Language Summary

Rural-dwelling cancer survivors are more likely to experience Financial Toxicity (FT) in tandem with greater cancer care-related travel burdens. This qualitative study sought to examine how FT and travel burdens may pose dual burdens for cancer survivors, and assess their effects on care experiences and subsequent cost-coping strategies. We conducted semi-structured interviews with (n = 12) participants sampled from the Lessening the Impact of Financial Toxicity (LIFT) study, an intervention that screened for FT and provided site-based financial navigation services and supports. Interview participants were mostly women, with a median age of 60.1. The median COmprehensive Score for financial Toxicity (COST) score was 9.5, indicating a high degree of FT, and the median round-trip travel distance was 25.6 miles. Participants reported cost-coping strategies to reduce travel-associated costs, such as “stacking” appointments to reduce travel costs and taking advantage of non-medical assistance offered health systems’ financial assistance programs (e.g., gas cards). Participants also reported shared burdens with caregivers who also shouldered costs. Concomitant caregivers- or cancer survivors who were also caregivers- were especially in need to supports to mitigate the dual burdens of cancer care-related FT and travel burdens.

Introduction

Affordability is a key dimension of access to care^1,2 and is especially salient for cancer survivors, a population that now exceeds 18 million in the United States (U.S.). ³ A 2017 study estimated that one-third of insured patients with cancer in the U.S. have incurred higher-than-expected costs associated with cancer care, ⁴ which may cause financial hardship, defined as “the patient-level impacts of the costs of cancer care”. ⁵ Recent research suggests that financial hardship, also called financial toxicity (FT), may be more prevalent among rural-dwelling cancer survivors,^6,7 with approximately 50.5% of rural cancer survivors reporting financial hardship, versus 38.8% of urban survivors. ⁸ The consequences of cancer-related FT include material hardship (high out of pocket costs and foregone/lost income) and behavioral changes in response to these costs (including use of savings, skipping non-medical bills, or delaying or foregoing needed care).^9,10 As the number of cancer survivors grows, and their life expectancy is extended, it is increasingly important to address both FT and health-related quality of life (HRQoL). ¹¹ Prior research shows that FT co-occurs with worsening HRQoL ¹² and non-adherence to, or discontinuation of, treatment for both cancer^13-15 and comorbid conditions such as arthritis, hypertension, diabetes, and depression.^15,16

An important dimension of affordability is cancer care-related travel burdens, defined as the “cumulative temporal and financial costs of travel associated with receiving cancer treatment,”, ¹⁷ which may modify or moderate the relationship between financial hardship and adverse outcomes among cancer survivors. ¹⁸ Reframing travel burdens— defined as travel costs including, but not limited to, time allocated to travel and monetary costs associated with travel (parking fees, tolls, gas) ¹⁷ —as both indirect and temporal costs can allow researchers to jointly study the behavioral dimensions of financial and travel burdens among cancer survivors. In doing so, we can simultaneously consider multiple dimensions of cancer care access: affordability, accessibility (distance to care and cumulative travel burdens; other system-level barriers to or facilitators of help-seeking and service use), accommodation (the degree to which a healthcare system enables patient entry into and continuity of care), and acceptability (degree of agreement between patient and provider expectations of and attitudes toward care). ¹ Further, prior work shows that cancer patients who must travel longer distances to receive care incur greater non-medical costs in the course of treatment, suggesting a need to incorporate other, non-medical costs of care. ¹⁹ In particular, rural-dwelling cancer survivors bear disproportionate travel burdens, as approximately 20% of rural residents live in excess of 60 miles from the nearest medical oncologist. ²⁰ Moreover, proportionally (relative to population) fewer community oncologists practice in rural areas, and those who do tend to have fewer practice locations. ²¹ Taken together, cancer care-related travel burdens may be most burdensome at the intersection of rurality, socioeconomic status, and race, as rural-dwelling cancer patients, ²² particularly American Indian and low-income patients, ²³ face the highest travel burdens for accessing cancer care in the U.S..^24,25 In prior research, women with metastatic breast cancer reported that travel-related costs were a barrier, with further distances compounded by the frequency and intensity of their treatment (e.g., appointments for scans, lab tests, and doctor visits). ²⁶

Moreover, due to the key role that caregivers play in facilitating access to cancer treatment, financial and travel burdens represent shared burdens between cancer survivors, their caregivers (familial and non-familial), and, in many cases, their households.^27,28 It is estimated that caregivers allocate an average of 32.9 hours per week, and a majority (63%) report needing to alter their work schedule to accommodate their caregiving responsibilities. ²⁹ Approximately 36% of Canadian caregivers lost 10 workdays per month. ³⁰ Per a 2023 analysis of Medical Expenditure Panel Survey (MEPS) data, wives of cancer survivors were over 9 times more likely to take time off to care for their spouse compared with men whose spouses did not have a history of cancer. ³¹ These shared burdens may be especially consequential for cancer survivors who are also caregivers (also termed “concomitant cancer survivors and caregivers” ³² ), who represent nearly one in four (about 4 million) cancer survivors in the U.S. ³³ and have a higher likelihood of self-reporting poor health and unmet social needs, compared with caregivers who did not have a cancer diagnosis. ³² In sum, the concept of shared burdens is essential for extending research on cancer care-related financial burden for multiple reasons: (1) first, patients are typically members of a household or extended family or friend network, and (2) within households, collectively shouldering the financial burdens of cancer care has downstream effects on household members’ healthcare utilization (e.g., receipt of routine vaccinations). ³⁴

In this study, we conducted semi-structured interviews with rural-dwelling cancer survivors in North Carolina who screened positive for FT and participated in a financial navigation (FN) trial to examine the intersecting effects of financial burdens and travel burdens on HRQoL and harmful care-altering/cost-coping behaviors. This specific focus on rurality is essential because cancer care facilities are concentrated in urbanized areas and rural residents face a mortality penalty compared with their urban counterparts. ³⁵ This rural mortality penalty is particularly acute in the U.S. South,^36-38 where rural hospital closures have increasingly reduced care access^39-41 and residents face the greatest travel burdens to access specialized cancer care.^24,25 Thus, this study focuses on rural-dwelling cancer survivors in a Southern state. In addition, we build on recent research^32,33 to add a unique focus on rural-dwelling cancer survivors who are also caregivers.

Materials & Methods

For this study, we undertook a deductive-inductive hybrid qualitative approach to understand the joint burdens of FT and travel burdens among rural-dwelling cancer survivors who received screened positive for FT and subsequently received comprehensive financial navigation. Our convenience sample was recruited among participants in the Lessening the Impact of Financial Toxicity (LIFT) study, a single-armed, multi-site Hybrid II Implementation-Effectiveness trial of FN in oncology care settings from 2019-2025.^42-44

Context of the Intervention

The LIFT study focused on both urban- and rural-dwelling cancer survivors at eight (8) sites across a single state (NCT: 04931251).^42-44 To summarize the LIFT study, we draw from Consolidated Framework for Implementation Research (CFIR) 2.0, an integrative implementation science framework with five domains, 48 constructs, and 19 sub-constructs. ⁴⁵ Below, in Table 1, we summarize LIFT as it is understood through the CFIR 2.0 lens.^45,46 Due to its overlap with the LIFT study, the COVID Public Health Emergency (PHE)- as a Critical Incident with attendant Policy and Law changes ⁴⁵ - is a key Outer Setting determinant that frames both the implementation of LIFT and the participants’ experiences of cancer care.

Table 1.

Overview of the Lessening the Impact of Financial Toxicity (LIFT) Intervention Organized by CFIR 2.0 (Sub)Domains

Overview of the LIFT intervention organized by CFIR 2.0 domains
CFIR domains & outcomes	LIFT-specific examples
Innovation (the evidence-based intervention that was implemented; Components and Features thereof)	• Financial navigation (FN) to reduce the burden of cancer-care related financial hardship42,44 • FN to reduce the burden of cancer-related financial hardship, including: Systematic FT screening and comprehensive intake assessment; Case management to determine participant eligibility for financial relief programs and coaching to enable participant coping with FT; Connecting patients to financial resources and assisting with applications and ongoing check-ins and electronic tracking of patient progress42,44
Implementation Process (the activities and strategies used to implement the innovation)	1) Assessed barriers, facilitators, readiness for implementation 2) Provided implementation support funding to sites 3) Provided FN training and booster training 4) Developed peer navigator learning collaborative 5) Provided centralized site-specific technical assistance 6) Developed quality monitoring system
Individuals (Domain); Roles (Subdomain): Innovation Deliverers Innovation Recipients	Financial navigators (FNs), nurse navigators and social workers) embedded at eight (8) cancer hospitals 47 Urban- and rural-dwelling cancer survivors who screened positive for cancer-care related financial toxicity (FT)
Inner Setting (the setting in which the innovation is being implemented)	Cancer hospitals/clinics in both rural and urban markets across North Carolina (NC)
Outer Setting (the setting in which the inner setting exists)	Policy and Laws: Policy factors that affected continuity in low-income participants’ insurance coverage, including: • Pause on Medicaid redeterminations for the duration of the COVID-19 Public Health Emergency (PHE) • The termination of the COVID-19 PHE and resumption of procedural disenrollments in Medicaid (May 11, 2023) • Medicaid expansion (implemented December 1, 2023 in NC) • Long wait times for procedural (re)determinations of eligibility for Medicaid Critical Incidents: For example, the COVID Public Health Emergency (PHE) was a disruptive global event that affected both care delivery and implementation of the intervention. Other Outer Settings • Other health systems, outside of the LIFT intervention sites
Innovation Recipient Reach	The LIFT study reached rural and non-rural-dwelling cancer patients and survivors across NC who were within 5 years of cancer diagnosis or recurrence and screened positive for FT.

Study Inclusion Criteria

The LIFT trial recruited participants living in rural NC with a cancer diagnosis who previously participated in LIFT. Rurality was defined based on ZIP code of residence using the Rural Urban Commuting Areas (RUCA) classification scheme, which defines Census tracts and ZIP Code Tabulation Areas’ (ZCTAs) rurality based on cities’ and towns’ population size and resident worker commuting patterns/flows. Financial eligibility was established using the COmprehensive Score for financial Toxicity (COST), a 12-item patient-reported outcome (PRO) measure that assesses the financial burden of cancer care on a 0-44 scale, with lower scores indicating worse FT. ⁴⁸ In order to be included in the study, participants had to have a COST score of ≤22, which aligns with prior thresholds for FT risk.

The inclusion criteria for this ancillary study were as follows: (1) Age ≥18 with any type and stage of cancer and a confirmed cancer diagnosis within 5 years or currently living with advanced disease, (2) participation in the LIFT Study at any of the 8 sites, rural or non-rural, (3) Completion of the intake survey, baseline COST survey, and completion of at least one check-in for the LIFT Study, (4) Score ≤22 on the COST measure, indicating high financial distress, (5) residence in a rural NC area, and (6) in keeping with the parent study, ability to read and speak English.

Recruitment Strategy

For this post-implementation qualitative analysis of experiences of participants in the LIFT trial, we recruited from a convenience sample of LIFT participants who met our pre-specified inclusion criteria. ⁴⁹ Participants were contacted directly after consultation with their site-based Financial Navigator to determine if the potential participant might be appropriate to contact about participation (e.g., hadn’t just received bad news, or moved away). Study enrollment information was provided via email and phone call. Few eligible participants declined participation. This is due, in part, to the fact that we first vetted potential participants through site financial navigators. Of the 13 LIFT participants we approached, 12 agreed to participate in this study and one declined to be interviewed for unknown reasons. No systematic differences were observed or assessed.

Interview Procedure

An interview guide was structured to elicit results in three domains: (1) rural-dwelling patients’ experiences of cancer treatment while navigating FT, (2) patient perceptions of travel burdens undertaken in the course of accessing cancer care, and (3) perceived implications of both FT and travel burdens for care on HRQoL. The interview guide was not modified iteratively during data collection. The probes in the original guide enabled the interviewers to adapt to the non-linear, conversational style of the in-depth interviews. All study participants provided informed written consent prior to study enrollment, and participants were informed that they could terminate their involvement in the study at any time as part of the informed consent process. All consented participants who took part in semi-structured interviews with the study team were compensated with a $25 gift card for their participation. The study was conducted in accordance with the Helsinki Declaration of 1975, as revised in 2024.

All interviews were conducted and recorded virtually between September 2023– June 2024 by two interviewers (MM and MG) who were embedded within the LIFT intervention, with support from another researcher (AMP) in preparation for interviews. Due to the interviewers’ embedded roles in the LIFT intervention, study participants had prior relationships with the interviewers. The researchers’ background as cancer outcomes researchers with a focus on care access and financial toxicity informed their current research interests The median interview length was 38 minutes, with a range of 19 to 76 minutes. We did not find that interview length influenced the depth or comparability of the data. The differential lengths reflected, in part, participant technical difficulties, as well as non-linear story-telling styles with asides that added to the length of the interviews. Overall, the interviews had a conversational style, which encouraged elaboration beyond the probes. We conducted a total of 12 interviews with cancer survivors, quickly reaching saturation.^50,51 The number of interviews was within range of previous qualitative studies that assessed the number of interviews needed to achieve thematic saturation, particularly in studies with relatively homogeneous participant pools. ⁵²

To ensure confidentiality, we assigned study ID variables to each participant. All names and contact information (phone and email) used to recruit participants were kept in a separate file from the interview transcript data and interview recordings. We accordingly removed any identifiable data and only used participant IDs on transcripts prior to storing the qualitative data on Microsoft’s cloud-based platform, SharePoint. Linked electronic survey data were stored within REDCap on a protected server accessible only by research staff. Study procedures for the parent study (LIFT) were approved by the University of North Carolina at Chapel Hill’s (UNC) Institutional Review Board (IRB) (Study #20-1997). Study procedures for the current study were approved by UNC’s IRB (Study #22-2549).

Analytic Strategy

We conducted a rapid qualitative analysis (RQA) of 12 interviews with rural-dwelling cancer survivors who screened positive for FT. ⁵³ Rapid qualitative analysis for Consolidated Framework for Implementation Research (CFIR) 2.0 differs from traditional qualitative approaches in that analysts do not code interview transcripts. ⁵³ Rather, the research team deductively codes interview notes based on a template organized by CFIR domains and determinants relevant to the intervention under study. “The rapid qualitative CFIR approach is less resource-intensive, requiring fewer analyst hours and eliminating the cost of transcription, but requires experienced analysts to simultaneously conduct interviews and write and align (“code”) notes with CFIR constructs”. ⁴⁶ In this study, inductive codes fell within the CFIR 2.0 Outer Setting and Individuals domains. For the latter, there was a specific focus on the Roles subdomain as they related to cancer survivor participants’ experiences throughout the FN intervention. A key strength of our CFIR-informed RQA approach is that it aligns our analysis with the parent project- LIFT- a multi-site intervention to address FT among cancer survivors.

First, in keeping with a hybrid deductive-inductive qualitative approach, we simultaneously developed the interview guide and defined the inductive themes and their attendant domains. Thereafter, we developed a note-taking document for the interviewers, which also corresponded with the respective domains.

Second, prior to conducting interviews, we co-created a summary template for the team to use as they conducted CFIR 2.0-based deductive and inductive coding of detailed interview notes and audio recordings. ⁴⁶ This summary template was tested out on a subset of the interviews by paired reviewers (AMP & HK), and assessed for usability, relevance, and consistency. Once consistency was established across the team, we divided the interview recordings and transcripts among the team (AMP, HK, and CM) and summarized the interviews. The first round of coding consisted of open-coding informed by the specified domains in the interview guide.

Finally, the summaries were transferred to a matrix, corresponding participant responses to domains. This enabled an inductive analysis within the defined themes and their attendant domains. Thereafter, the research team convened to finalize the themes for the qualitative analysis. We then undertook a hybrid (deductive-inductive) qualitative analysis of three themes: (1) rural-dwelling patients’ experiences of cancer treatment while navigating FT, (2) patient perceptions of travel burdens associated with accessing cancer care, and (3) perceived implications of both FT and travel burdens for care on HRQoL. To minimize bias, three team members (AMP, HK, and CM) independently extracted information and coded segments from the interview transcripts using separate summary template documents. Thereafter, we undertook an iterative process of deductively coding within the inductive themes, identifying emergent subthemes. As we compiled the coded segments into the RQA Matrix, we were able to qualitatively assess thematic saturation across the interviews. The reporting of this study conforms to the Consolidated criteria for REporting Qualitative research (COREQ) guidelines. ⁵⁴

Results

Participant Characteristics

Participant characteristics are summarized in Table 2. Our study sample included 12 rural-dwelling cancer survivors who screened positive for FT and subsequently completed the LIFT intervention. The median COST score was 9.5 (IQR: 5.5 – 16.0; Table 2), indicating high degrees of FT among participants. The median age at diagnosis was 58.4 (IQR: 49.7 – 65.6). Over one-half of the participants were women (66.7%), and a third were non-Hispanic Black. In terms of ethnicity, none of the participants were Hispanic. One-half of participants were divorced.

Table 2.

Summary Table of Participant Characteristics

Summary table of participant characteristics (n = 12 rural-dwelling cancer survivors)
​	Median (IQR) or Sum (%)
Cancer Site(s) *
Breast	4 (33.3%)
Leukemia/Lymphoma	1 (8.3%)
Prostate	1 (8.3%)
Colon or Rectal	1 (8.3%)
Lung	2 16.7%)
Other	4 (33.3%)
Round-trip travel distance to cancer care site	25.6 (13.8 – 45.6)
COST Score	9.5 (5.5 – 16.0)
Age	60.1 (50.1 – 62.2)
Age at Diagnosis	58.4 (49.7 – 65.6)
Sex
Female	8 (66.7%)
Male	3 (25.0%)
Not Reported	1 (8.3%)
Ethnicity
Hispanic	0 (0%)
Non-Hispanic	12 (100%)
Race
Non-Hispanic Black	4 (66.7%)
Non-Hispanic white	8 (33.3%)
Marital Status
Currently Married	1 (8.3%)
Divorced	6 (50%)
Widowed	3 (25.0%)
Not Reported	2 (16.7%)
Income Band (annual)
<$12,000	4 (33.3%)
$12,000 – 23,999	5 (41.7%)
$24,000 – 35,999	1 (8.3%)
$36,000 – 59,000	1 (8.3%)
Not Reported	1 (8.3%)
Insurance Type at Baseline
Medicare	3 (25.0%)
Tricare	1 (8.3%)
Medicaid	1 (8.3%)
Commercial/ESI	2 (16.7%)
None	3 (25.0%)
Missing	2 (16.7%)

*Sums to 13 because one participant had both a primary and secondary cancer site.

Pertinent to cancer care affordability and travel burdens, participants had low incomes, high rates of uninsurance, and relatively high travel distances to access cancer care. For all participants, the primary cancer care site was rural. The majority (75%) of respondents had annual incomes less than $24,000 at LIFT baseline. A quarter (25%) of respondents were uninsured at baseline, and an additional 25% had Medicare coverage at baseline.

In terms of travel burdens, we note that rural-dwelling LIFT participants had greater travel distances to access their primary cancer care site than their urban-dwelling counterparts (median distance of 22.7 miles (Interquartile Range (IQR): 9.2-33.1) versus 20.6 miles (IQR: 12.3-36.1) among urban-dwelling counterparts). Among the rural-dwelling participants in this qualitive study, the median round-trip distance to access their primary cancer treatment site was higher than the overall median for LIFT participants overall, at 25.6 miles (IQR: 13.8 – 45.6; Table 2). The reported travel distances reflect participants’ roundtrip travel distances to the primary treatment site, but do not reflect the travel burdens borne by these participants given the frequency and intensity of cancer care during active treatment. Therefore, participants’ round-trip distance to access cancer care should be interpreted as part of a fuller picture of cumulative, non-medical costs of accessing cancer care.

In the sections that follow, we present the results of our qualitative analysis of semi-structured interviews with rural-dwelling cancer survivors who screened positive for FT. Our qualitative analysis was structured around three inductive themes: (1) rural-dwelling patients’ experiences of cancer treatment while navigating FT, (2) patient perceptions of travel burdens associated with accessing cancer care, and (3) perceived implications of both FT and travel burdens for care on HRQoL (Figure 1). From our deductive analysis, the five emergent subthemes are as follows: (a) changes in care experiences amid COVID (b) cost coping with a focus on travel burdens, (c) perceived gaps in FN programs to support cancer survivors, (d) emotional and psychosocial responses to the costs of cancer-related care, and (e) shared burdens & caregiver support.

Figure 1.

Schematic diagram depicting the relationship between the (3) inductive themes and the (5) emergent subthemes

Theme 1: Rural-Dwelling Patients’ Experiences of Cancer Treatment While Navigating FT

Subtheme A: Changes in Care Experiences Amid COVID

The COVID-19 Public Health Emergency (PHE), declared in March 2020 and terminated in May 2023, shaped the Outer Setting of the LIFT study, which ran from 2019 to 2025. As the interviews were conducted from September 2023– June 2024, the COVID-19 PHE was still a salient factor in participants’ recollections. In particular, respondents reported changes in health systems’ delivery of care and in the environments in which care was delivered.

Several participants reported that COVID changed their experience of care. Respondents generally reported adhering to COVID-related mask mandates in healthcare settings and exercising caution more broadly. One respondent reported that they could not see any doctors in their area until they received their first COVID vaccine. Aware of their status as immunocompromised, participants reported taking additional precautions. For public transit users, the perceived necessity of precautions intersected with travel for cancer care. One respondent (Participant 01, age 56, metastatic prostate cancer diagnosis), who relied on public transportation to access appointments, noted, “I had to be more and more careful than I have been.”

While telehealth use soared after the onset of the COVID PHE, many participants did not report using telehealth services to complement their in-person appointments for cancer care. There was a strong preference for in-person visits with examinations and discussions of test results. Another respondent (Participant 03, age 69, diagnosed with Stage 0 breast cancer) cancelled her remaining virtual appointments because she felt that she did not get her money's worth as the doctor did not perform any examinations, and mostly talked to or counseled her. To this point, she said, “I felt that if I’m gonna give you a $50 deductible, or pay your fee, I want more than that.” She framed this as a means of coping with the costs of cancer care, which made her, “...stop and think and try not to live above [her] means, because there for awhile [she] was, you know, living above [her] means. But the cancer has really wakened [her] up about the cost of living...” Another respondent (Participant 01, age 56, metastatic prostate cancer diagnosis) remarked, “it was alright” after stating that he only had one telehealth visit, despite the considerable cost of travelling to his appointments.

Theme 2: Patient Perceptions of Travel Burdens Associated With Accessing Cancer Care

Subtheme B: Cost Coping With a Focus on Travel Burdens

“Tried to get back-to-back/same-day appts with immunotherapy and radiation, but it was hard because immunotherapy ran long and radiation had to be pushed back – but the facility was accommodating.” ─ Participant 07, age 63, diagnosis not reported

With an eye on reducing the temporal and monetary travel-related costs of cancer care, respondents attempted to schedule same-day or back-to-back appointments during active treatment. Multiple respondents stated that they felt that health systems could better support cancer survivors through flexible and coordinated appointment scheduling to reduce travel burdens. In practice, this can look like ‘stacking’ appointments when feasible. One respondent (Participant 07, age 63, diagnosis not reported) reported that “Everyone was really supportive, and made the appointments easier for [me] to get there.” This included scheduling appointments later in the day to enable back-to-back oncology and radiation appointments).

When asked how FN programs might meet the needs of cancer survivors, respondents generally converged on the need for transportation and financial assistance. Participant 01 (age 56, metastatic prostate cancer diagnosis) relied on public transportation to get to his appointments because “he no longer trusts [his] legs like that,” but the bus “goes out of the way”, resulting in a one-way trip of 1.5-2 hours to get to his appointments- not including the costs associated with getting a ride to the bus stop and the time spent waiting for the buses. Due to these overlapping and cumulative travel costs, he reported that he had to reschedule treatment 3 times due to the cost of gas and challenges of coordinating transportation.

“Yeah, it [cancer care-related financial burden] was actually harder when I was actually going through the treatments, because I was having to travel so much- and of course, radiation and all that makes you tired anyway. So yeah, that was the worst part of it, physically and financially.” (Participant 03, age 69, breast cancer diagnosis)

In terms of assistance to defray transportation-related costs, participants especially appreciated assistance that addressed non-medical costs, such as gas cards. One respondent (Participant 03, age 69, breast cancer diagnosis), who lived on a fixed income, reported spending $200 per month on gas during active treatment, but the gas cards defrayed that cost (“eased my burden tremendously”). She later expressed gratitude that she was able to drive herself to appointments, pointing out the mismatch between public transportation jurisdictions (often bounded by city or county lines) and healthcare markets. Specifically, she noted that because public transit did not usually cross county lines, what would have been a 2-hour round-trip became a 5-hour round-trip. Additionally, respondents noted that while the hospital did not charge for parking, parking was scarce.

Subtheme C: Perceived Gaps in FN Programs to Support Cancer Survivors

Respondents suggested that financial assistance programs include resources to defray indirect, travel-related costs, such as flights and hotels. Additionally, multiple respondents suggested that more financial assistance programs should prioritize utility bills (e.g., electricity, heating) and other bills (e.g., car note, car insurance) that represent fixed costs of living. One respondent emphasized the need for support for “people in the middle” whose income exceeds the cut-offs for financial assistance for utility bills.

In terms of financial assistance program implementation, respondents also noted the importance of avoiding stigma when providing financial assistance and uncompensated care. One respondent (Participant 05, age 57, lung cancer diagnosis) noted that her primary cancer care site provided uncompensated care: “… [health system] weren't worried about patients paying. They knew that they would get some patients who couldn't pay, who didn’t have insurance. So they did the full treatment, anyway. So I wasn’t hounded about payment.” She then contrasted her experiences with a major health system that provided financial assistance against her experience receiving surgery at a smaller teaching hospital that did not provide financial assistance. As a result, she was billed about $60,000 for a surgical procedure provided at the hospital without a financial assistance program.

Respondents also reported that non-monetary support would address some of the distressing aspects of their experiences with cancer. One form included peer support programs, such as a “cancer buddy system” would help foster a sense of camaraderie, lessen their isolation, and enable information sharing about coping with symptoms. The second form of non-monetary support— which fits within existing FN models— was assistance with navigating state benefits (e.g., Medicaid) and employer benefits (e.g., short-term and long-term disability benefits).

Finally, one respondent expressed concern about the mismatch between financial assistance programs’ eligibility criteria and the duration of the impacts of cancer care-related financial hardship, expressing worry that “it won’t be as easy to get financial assistance now that [she’s] no longer receiving treatment” (Participant 12, age 44, lung cancer diagnosis). In a similar vein, another respondent (Participant 01; age 56, metastatic prostate cancer diagnosis) stated, “It shouldn’t be… the people who need the help don’t get the help.”

Theme 3: Perceived Implications of Both FT and Travel Burdens for Care on HRQoL

Subtheme D: Emotional and Psychosocial Responses to the Costs of Cancer-Related Care

“My deductible was devastating.” – (Participant 02, age 78, diagnosed with Stage 0 breast cancer).

A significant source of stress was the costs of cancer-related care and their unpredictable nature. Regarding the emotional impact of the financial burden of cancer treatment, one respondent (Participant 03, age 69, breast cancer diagnosis) simply stated that it was, “very terrifying... very stressful...” to navigate the costs of cancer care while living on a fixed income (social security checks). Because she was living on a fixed income, the cost of gas ($200/month) represented a significant out-of-pocket (OOP) cost. She also reported that the travel burden (4 hours roundtrip, 5 days a week for 5 weeks) for radiation therapy exacerbated the financial stress associated with cancer care. Prior to her diagnosis, she had been uninsured without a usual source of care, and upon aging into Medicare, she found that she could no longer seek care at a community clinic because she had insurance coverage.

Participants’ discussion of emotional and psychosocial coping converged on their struggles to maintain a foothold in the workforce as their HRQoL declined. After detailing her experience of working physically demanding jobs during active treatment, Participant 12 (age 44, lung cancer diagnosis) paused and said with a sigh, “Everything is such a struggle.” Indeed, amid insurance churn between jobs, she was rationing her prescription medicines. Another participant (Participant 02, age 78, diagnosed with Stage 0 breast cancer) left retirement to work as a nurse for 2 days a week to cover her deductible without relying on her extended family for financial assistance. Without financial assistance from the cancer hospital, she would likely have had to work more hours to cover her OOP costs, which include two outstanding bills that she was paying down in monthly installments. As for coping, she said, “Well, mostly I go for a long walk. or I think about how I'm blessed and how some people have a quarter what I have, and that brings me out.”

Subtheme E: Shared Burdens & Caregiver Support

“…you know, I was in the nursing home for one a period, a time one time. I don't really want to go back to- never go back to one. But you know I don’t want to keep putting on this burden on nobody, neither.” – Participant 01, age 56, metastatic prostate cancer diagnosis

Among respondents who experienced marked changes in their health status following their cancer diagnosis and during active treatment, extended family and friend networks were key supports. This support included enabling activities of daily living, transportation assistance, and financial assistance. One participant (Participant 01, age 56, metastatic prostate cancer diagnosis), progressively lost his ambulatory mobility due to a cancerous growth that pressed against his spine and could no longer drive. As a result, he became more reliant on his siblings and children for rides to the bus stop and for monetary support as his savings dwindled when he was no longer able to work and costs mounted. He reported that extended family members were having difficulty maintaining their job status while juggling caregiving responsibilities.

These shared burdens were especially acute for cancer survivors who were also caregivers (concomitant caregivers). Two study participants were mothers in their 30s and 40s. The first (Participant 04, age 37, breast cancer diagnosis), diagnosed during pregnancy, faced rather severe declines in her HRQoL in conjunction with financial hardship compounded by job loss, which meant that she had to send her children to live with relatives until she was stably housed again. This affected her ability to serve as a parent and caregiver to her children, and put her children in the position of being first responders when her health worsened due to treatment side effects, a hospital-acquired infection (Methicillin-resistant Staphylococcus aureus, or MRSA), and late-term effects of treatment. Another participant (Participant 12, age 42, lung cancer diagnosis) navigated single parenthood while dealing with late-term effects of treatment (strokes and seizures), increasingly relying on her oldest daughter to drive her to appointments and assist her with daily life activities. She also expressed concern that her youngest daughter was growing up too fast after witnessing multiple medical emergencies.

Discussion

For this study, we conducted semi-structured interviews with rural-dwelling cancer survivors who screened positive for FT to better understand their experiences at the intersection of financial hardship and travel burdens.^55,56 When asked about the extent of their cancer-related financial burdens, study respondents reported varying degrees of severity. We note that participants were at different points in their cancer experience, ranging from being in chemotherapy to being in active surveillance with biannual check-ups. The perceived financial burden seemed to correspond with the intensity of their treatment (e.g., greater frequency of appointments for radiation therapy or chemotherapy) rather than their time in treatment. This concords with prior research that found cancer survivors’ perceived financial distress did not necessarily correspond to their time in treatment. ⁵⁷ Moreover, multiple respondents reported reductions in their perceived financial burden when they switched from chemotherapy or radiotherapy to oral anticancer medications (OAMs), reducing the frequency of travel for care.

While we did not undertake a comparative study of rural- versus urban-dwelling cancer survivors, we note that rural-dwelling LIFT participants had greater travel distances to access their primary cancer care site than their urban-dwelling counterparts. Our findings concord with research suggesting that rural-dwelling cancer survivors face greater travel burdens and higher financial hardship compared with their urban-dwelling counterparts.^7,24,25 This is particularly urgent as cancer care-related travel burdens and FT are associated with an increased risk of mortality.^55,56,58

As a result of our hybrid deductive-inductive analysis, we had three (3) three inductive themes with five (5) nested emergent themes. In terms of rural-dwelling patients’ experiences of cancer care while navigating FT (Theme 1), the COVID PHE was a key context that shaped their access to and experience of care and their perceptions of risk. This intersected with the subtheme of changes in care experiences amid the COVID PHE. Respondents recalled restrictions on access to cancer hospitals, including public health precautions such as conditioning access to appointments on vaccination status. For participants who relied on public transit, this heightened perception of risk spilled over into their experiences of commuting to access cancer care, as public transit was seen as particularly risky for immunocompromised cancer survivors. In fact, in the earlier days of the COVID pandemic, people reporting poorer health were more likely to report avoiding using public transit, ⁵⁹ but this effect was attenuated among low-income riders. ⁶⁰

With regard to Theme 2 (“Patient perceptions of travel burdens associated with accessing cancer care”), there were two nested subthemes: (b) cost coping with a focus on travel burdens, and (c) perceived gaps in FN programs to support cancer survivors. In terms of cost coping, respondents sought to reduce cumulative travel burdens by scheduling back-to-back appointments. Regarding health systems’ financial assistance programs, respondents gratefully acknowledged the assistance they received in the form of gas cards and rebates for medications, while expressing a need for resources that defray the fixed costs of living, such as utilities or rent. Moreover, respondents reported that income-based and time-bound eligibility criteria meant that there was unmet need. For respondents who were no longer in active treatment, the mismatch between financial assistance programs’ eligibility criteria and the duration of the impacts of cancer care-related financial hardship was particularly salient. Further, to address these identified gaps, financial assistance programs can address travel-related burdens through supports, such as discounted or free bus passes, scheduling coordination (previously referred to as “stacking appointments”) to reduce repeat travel to the cancer hospital, and lodging assistance. Moreover, given the limited and disjointed jurisdictions of public transit systems in the state, health system partnerships with transit agencies can potentially allay travel burdens for patients who have to travel across county lines to access care. ⁶¹

Finally, regarding Theme 3 (“perceived implications of both FT and travel burdens for care on HRQoL”), the two sub-themes pertained to respondents’ emotional and psychosocial responses to the costs of cancer-related care, and shared burdens and caregiver support. Shared burdens were identified among several participants who experienced the dual burdens of cancer care-related FT and travel costs, reflecting the fact that the financial burden of one or more household members,’ chronic illness may induce cost-coping behaviors among other members of their household. ⁶² These behaviors include delaying or forgoing needed medical care, especially when household members were un- or under-insured, low-income, and reported poor health status. ⁶² Multiple respondents reported that the financial and logistical dimensions of cancer care altered their family members’ own behaviors, including their ability to maintain their employment status and coping with their shared financial burdens.

In particular, respondents who were concomitant caregivers reported shared burdens, with central concerns regarding their ability to fulfill their roles as caregivers as they experienced HRQoL declines during active treatment. Concomitant caregivers with cancer reported struggles to maintain a foothold in the workforce as their HRQoL worsened. These reductions in HRQoL were downstream of reductions in health-enabling activities which can and do occur in conjunction with side effects and late-term effects of treatment, as well as the effects of medication non-adherence, a commonly reported strategy for coping with FT. ⁶³ Concomitant cancer survivors and caregivers were also more likely to report unmet needs (food, housing, and transportation insecurity). ³² Moreover, among older adults, caregivers who are also receiving care tend to be older, in more financially precarious positions, and report worse physical health. ⁶⁴ Therefore, in this study, we sought to explicitly account for cancer survivors’ caregiver status to better understand the potential, multidirectional spillover effects of chronic health conditions on household financial burden.

Limitations and Future Directions

First, our study has limited generalizability due to its small sample, and its focus on rural residents in a single state (NC). While our sample was comprised of participants in a FN trial who chose to be contacted again by their site financial navigators, concerns about generalizability should be situated in the broader context wherein the majority of cancer survivors experience FT at some point in their cancer trajectory. Prior research on FT and travel burdens among cancer survivors enrolled in oncology clinical trials indicates participants’ reluctance to confide about FT to research teams. ⁶⁵ Our study addresses this barrier by sampling among participants in a financial navigation trial to address FT among cancer survivors, such that we are not asking about problems without improving access to potential solutions. This qualitative study of the dual burdens of FT and travel burdens is unique in that it was conducted with respondents who screened positive for FT– per a validated and objective measure rather than a subjective self-report.

Second, while respondents reported that their perceived travel burdens eased when they switched to OAMs, we did not measure participants’ treatment (non)adherence (in contrast with discontinuation [premature cessation of treatment], non-adherence is defined as continuing treatment, but rationing medications or taking less than the full dose). ⁶⁶ Oral anticancer medications (OAMs) are a standard treatment for several of the most common incident cancers (breast, prostate, and lung cancers), however, our knowledge of cancer survivors’ non-adherence to OAMs is largely based on administrative data, which do not provide details on the potential reasons for patients’ non-adherence (e.g., drug tolerability, side effects, or cost-coping). ⁶⁶ Notably, self-report data on drug adherence are subject to social desirability bias, such that patients tend to overstate their adherence. ⁶⁷

Third, we limited our participant pool to cancer survivors who could read or speak English. And our sample did not include any Hispanic respondents. This limits the generalizability of our study and highlights future opportunities for research at the intersection of FT and travel burdens. After diagnosis, rural cancer survivors experience disparities across HRQoL domains ⁶⁸ along the intersections of race, ethnicity, gender, socio-economic status, age at diagnosis, and rurality. ⁶⁹ However, less is known about the burden of FT at these intersections. For example, Black women breast cancer survivors are more likely to be diagnosed at younger ages with more aggressive breast cancer subtypes, and are more likely to become disabled, miss work,^34,70,71 forego income, ⁷² or lose their jobs, ⁷³ and health insurance coverage ⁷⁴ compared with White breast cancer patients. These racial disparities persist as time after diagnosis increases. ⁷⁵ Therefore, future research should apply an intersectional lens to the study of HRQoL and FT among rural cancer survivors, accounting for race, ethnicity, class, and disability status.

Conclusion

Overall, rural residents have higher incidence of and mortality due to cancers that are preventable by timely receipt of screening. ⁷⁶ Further, rural cancer survivors in the U.S. South face a double jeopardy, wherein they have poorer access to care (e.g., routine screening ⁷⁷ and cancer treatment, ²⁵ and longer travel distances to primary and specialty care providers ⁷⁸ ) in tandem with heavier burdens of financial toxicity. ⁸ Cancer survivors are more likely to experience transportation insecurity as well as financial distress, ⁷⁹ and the intersection of these burdens may exacerbate their HRQoL declines and health status declines. ¹⁷ Taken together, it is possible that the mechanism by which cancer-related travel burden and financial toxicity reinforce one another includes, but is not limited to, the increased indirect and non-medical costs and the temporal costs of travel in tandem with the behavioral dimension of FT (e.g., cost-coping by rationing medications and delaying or forgoing care). As such, our qualitative study examined the overlapping burdens of financial hardship and travel burdens among rural-dwelling cancer survivors who screened positive for FT in North Carolina.

Our findings also highlight the interdependence of cancer survivors and their caregivers. Importantly, we also glean insights from the experiences of concomitant cancer survivors and caregivers, who navigate their dual roles while facing greater financial precarity than their counterparts who are not caregivers. ³³ In this regard, our study makes an important contribution because adult cancer survivors are disproportionately likely to be caregivers themselves (22.7% of cancer survivors versus 20.0% in the general population ³² ), and the functional and HRQoL changes (e.g., increased symptom burden ⁸⁰ ) associated with cancer treatments may affect their ability to fulfill these roles.

Health systems’ financial assistance programs are key resources for addressing FT and travel burdens borne by cancer survivors. ⁸¹ These monetary (gas cards, pharmacy rebate programs, assistance with utilities) and non-monetary (assistance with applications for health insurance, disability insurance, and other financial protections) resources address cancer survivors’ urgent needs. However, participants in our study identified unmet need due to income-based and time-bound eligibility criteria that were out of alignment with the felt effects of FT across their cancer trajectory (i.e., the burden of FT continues beyond active treatment ⁸² ). They also identified opportunities for health systems’ financial assistance programs, including but not limited to transportation assistance to improve access for patients who rely on public transit and assistance with fixed costs of living, such as insurance premiums or utilities.