Interventions to Address Cancer-related Financial Toxicity: Recommendations from the Field

Abstract

Purpose:

Addressing financial toxicity among cancer patients is a complex process that requires a multifaceted approach, particularly for rural patients who may face additional cost-related barriers to care. In this study, we examined interventions being implemented by financial navigation staff at various cancer centers that help address financial toxicity experienced by oncology patients.

Methods:

We conducted semi-structured interviews with a convenience sample of financial navigation staff across 29 cancer centers in both rural and urban areas in 7 states. Interviews were audio-recorded and transcribed. Descriptive coding and thematic analysis techniques were used to analyze the data.

Findings:

Thirty-five participants were interviewed, the majority of whom worked in cancer centers located in rural counties. Participants identified the use of screening tools, patient education, and access to tailored financial assistance resources as best practices. Immediate resource needs included additional financial navigation staff, including lay navigators and community health workers, to promote linkages to local resources. Suggested clinical areas for intervention included proactive and early implementation of financial assessments and discussions between providers and patients, along with training and access to regularly updated resources for those in financial navigator/counselor roles. Participants also discussed the need for policy-level interventions to reform health systems (including employment protections) and health insurance programs.

Conclusions:

Implementing proactive methods to screen for and address financial needs of patients is essential to improving cancer-related outcomes. Additional programs and research are needed to help establish systematic and standardized methods to enhance financial navigation services, especially for underserved rural communities.

Introduction

Cancer is one of the costliest health conditions in the United States (US) with cancer costs projected to reach at least $246 billion in 2030 (a 34% increase from 2020).¹ Cancer patients have a higher risk of experiencing financial burden compared to those with other chronic illnesses and those without a cancer history as a result of higher out-of-pocket costs and loss of income due to inability to work.^2,3 In a nationally representative study based on the Medical Expenditure Panel Survey data, 13.4% of nonelderly adults with cancer had high total financial burdens, in contrast to 9.7% of those with other chronic conditions such as diabetes, hypertension, and heart disease and 4.4% of those without any chronic conditions. Between 2008 and 2011, mean annual medical expenditures among male ($8,091) and female ($8,412) cancer survivors was higher than males and females without a cancer history ($3,904 and $5,119, respectively).² This undue financial hardship associated with the high costs of cancer care and cancer-related job and income loss is often referred to as financial distress or toxicity.⁴

Financial toxicity is known to reduce health-related quality of life⁵ and has been linked with other clinically relevant patient outcomes including decreased survival, treatment compliance,^6,7 and increased symptom burden.⁸ Commonly reported factors associated with financial toxicity include: being female, younger age, low income, receipt of adjuvant therapies, and more recent diagnosis of cancer.⁹ Additionally, rural cancer patients report greater financial burden related to their diagnosis and treatment than their urban counterparts, particularly Black rural cancer patients.¹⁰ Findings from the Carolina Breast Cancer Study of 2,435 women showed that compared to urban women, rural women were more likely to have a combination of both cancer-related job and income loss (45.6% vs. 37.1%). Furthermore, rural White (44.8%), rural Black (47.9%), and urban Black (50.2%) women had a higher risk of having both job and income loss compared to their urban White counterparts (33.5%). Patients who have health insurance coverage struggle also to cover cancer-related expenses and may experience financial toxicity.¹¹

To address these concerns, cancer centers have implemented several strategies to address the financial burden of patients, the majority of which are focused on early screening of patients for financial hardship, promoting cost-of-care conversations between patients and members of the healthcare team, and providing financial navigation services. Providing financial navigation services is the primary intervention strategy most commonly used by cancer centers to address patient financial hardship. This includes help with applying for pharmaceutical assistance or health insurance coverage, helping patients understand bills and other out-of-pocket expenses, and providing assistance with applying for foundation, charity or in-house financial assistance programs. Not all cancer centers have trained financial navigators or counselors on staff and those that do may not use a standardized approach to address the complex aspects of financial toxicity among cancer patients and their caregivers. Furthermore, many cancer centers, especially those in rural and other underserved regions, may be geographically isolated, leading to limited resources and limited capacity to provide comprehensive financial navigation services. These centers may therefore make adaptations to or develop their own process of providing financial assistance services. A recent systematic review notes that several studies have identified risk factors and outcomes associated with financial toxicity, but interventions to mitigate financial toxicity in cancer patients are lacking.¹² Addressing financial toxicity of cancer patients and their caregivers is a complex task which requires a multifaceted approach. However, little is known about the existing strategies used and ways in which cancer centers adapt financial assistance services to their settings to address financial hardship experienced by their patients.

To address these gaps, we conducted a qualitative study to examine the best practices and strategies used by staff in 29 rural and urban cancer centers across 7 states in the US to address the financial toxicity of cancer care. We also examined the needs of staff and cancer centers to improve assessment and addressing of financial needs for cancer patients, particularly rural patients.

Methods

This study was conducted by the Cancer Prevention and Control Research Network (CPCRN), a research network of eight universities across the US, funded by the Centers for Disease Control and Prevention (CDC). The CPCRN’s mission is to adopt and implement evidence-based cancer prevention and control strategies, particularly for underserved populations, including rural communities.¹³ Members of the CPCRN rural cancer workgroup designed and conducted semi-structured interviews across seven CPCRN states (IA, KY, NC, OH, OR, SC, WA). This study was reviewed and determined to be exempt by Institutional Review Boards at all participating CPCRN sites.

Sample

A purposeful sampling approach was used to reach a diverse population representing various geographic regions and cancer center types. Cancer centers that provided cancer care (hospitals and free-standing clinics) were identified by each CPCRN site through public websites, state cancer registries, statewide cancer consortia, and cancer center networks. Each CPCRN site used these sources to create a comprehensive list of cancer centers for their respective states. Cancer centers were categorized by rural-urban location within each state as defined by the US Department of Agriculture’s 2013 Rural-Urban Continuum Codes (RUCC)¹⁴ and were labeled as urban/metro (RUCC 1–3), non-metro/rural (RUCC 4–6), and rural (RUCC 7–9). These categories were used for sampling cancer care facilities to achieve an equal representation of RUCC categories, but facilities in RUCC 4–6 and 7–9 were combined into one rural category for analysis, since both groups are considered rural but differ in their county’s population size and proximity to urban centers. Cancer centers were also grouped by program type: National Cancer Institute (NCI)-designated cancer center, Commission on Cancer (CoC)-accredited, non-CoC-accredited hospital, or free-standing cancer clinic. Each CPCRN site aimed to recruit four participants from at least one of the three RUCC groups and center types.

Two methods were used to recruit study participants from each cancer center site. First, professional networks (e.g., relationships with American Cancer Society regional managers, state cancer registry staff, hospital systems) were used to recruit participants. Second, CPCRN study team members contacted (via email or phone) cancer centers from the list of cancer centers and were connected with individuals whose primary job responsibility was to assist cancer patients with accessing resources to help with the cost of cancer care, such as a financial navigator/counselor, social worker, or case manager. Individuals who were interested in participating were provided with a study information sheet before a phone or in-person interview was scheduled by a CPCRN study team member.

Data Collection

The study team developed a semi-structured interview guide and demographic survey that was used across all CPCRN sites. The interview guide and survey were piloted with three cancer center staff members at separate locations to determine the length of the interview and identify questions needing clarification. The final interview guide (see Table 1) assessed resources available to cancer patients at the center where the participant worked, if there were any resources available specifically for rural patients, how patients are screened for financial hardship, and participants’ perceptions of rural-urban differences in patients’ financial toxicity.

Table 1:

Interview Guide Questions

Topic	Questions	Prompts
I. Overview of Organization and Role	1. Tell me a little bit about [name of hospital / health system / clinic] and your role here.	Where and how is cancer care provided (i.e., are there satellite sites/locations)? How long have you worked here – and in what roles (build off response from survey when possible)? In general, what do your day-to-day job responsibilities look like?
	2. What (if any) role do you have in assisting patients and families who are concerned about the cost of their cancer care?
II. Patient Experiences and Financial Resources	3. How do you know if your patients have financial concerns?	Who typically brings it up in conversation (e.g., patient, family member, you, health care provider, another team member)? To what extent, if any, have patients expressed frustration or concern with their providers not discussing financial issues during their treatment?
	4. In your experience, how does cancer-related financial distress affect patients? Please share any specific patient examples.
	5. Within your organization, what structures/resources or personnel are in place to help patients and their families when they may have concerns about the costs of cancer care?	Such as: Medication assistance, Financial counseling, Transportation, housing, etc., Charity care, Assistance applying for Medicaid / other insurance programs, Payment plan, Discounted rate for services.
	6. Outside of your organization, what resources, both formal and informal, are you aware of and would recommend to patients with financial concerns?	Such as: Community programs (please specify, explain); Support group / advocacy organization; Resources from the American Cancer Society or other non-profit organizations; Prescription Drug Company Discounts/Grants.
	7. How do you communicate with members of the care team when patients have financial difficulties related to their cancer treatment?	Such as: Discuss during case conferences/tumor boards; Individual discussions with pharmacy staff, physicians, nurses, etc.; During rounds with the care team; Notation in EMR; Phone or email communication with care team members
III. Differences between Rural and Urban Cancer Patients	8. What, if any, financial burden differences have you noticed between patients from rural areas and those from urban areas?
	9. What specific programs/resources, if any, are available to patients who live in rural areas and/or must travel long distances to your hospital/clinic?
	10. What obstacles / challenges do rural-residing patients experience in trying to access these resources?	Such as Language; Literacy; Application process too complex; Patients do not discuss financial concerns with provider; Patients do not know what resources exist; Patients do not qualify for existing resources; Personnel do not have enough time to address financial needs; Personnel lack knowledge about resources.
	11. What gaps do you see in existing resources available to rural cancer patients?
VI. Conclusion	12. What suggestions do you have for improving the process of addressing cancer patients’ financial barriers to cancer care?	What do you consider to be the most immediate need and area for intervening in your community? (i.e., intervention topics)
	13. Is there anyone else within [name of hospital, clinic, health system] that you feel we should talk to about the topics we covered today?

Interviews were conducted by phone or in-person between December 2018 and June 2019 by trained interviewers from each CPCRN site. Prior to interviews, CPCRN study team members reviewed the study information sheet with participants to explain the purpose of the study and verified that the participant was willing to participate and have their interview audio recorded.

At the beginning of the interview, the interviewers collected and entered descriptive information about the study participant and cancer center into an online survey instrument. Participant characteristics that were collected included age, gender, race/ethnicity, educational attainment, time worked at their current location, and prior navigation training. Cancer center characteristics included program type (NCI-designated cancer center, CoC-accredited, non-CoC-accredited, or free-standing cancer clinic), rural-urban location as defined by RUCC (determined by facility ZIP Code), presence of a National Community Oncology Research Program (NCORP), extent of their center’s geographic catchment or service area (counties served by the program, determined by community needs assessments or participant report), and treatment services provided. Interviews lasted between 30 and 90 minutes.

Data Analysis

Descriptive statistics (frequencies and percentages) were used to analyze the survey data. Interview recordings were de-identified, transcribed, and imported into Dedoose (SocioCultural Research Consultants, LLC, Manhattan Beach, CA), a qualitative research software management tool, to facilitate coding and thematic analysis. The codebook was developed based on the interview guide questions and pilot tested by independently coding two transcripts, which led to revision of some code definitions and decision rules. Transcripts were independently coded by two research team members. Narrative summaries were written based on the code reports generated from Dedoose. A summary report was developed that included a narrative description of the themes and sub-themes that emerged, with illustrative quotes highlighting each theme. Findings were verified by members of the CPCRN workgroup and checked by CPCRN team members who had conducted interviews for consistency and reliability as the data were analyzed.

Results

Interview Site and Participant Characteristics

Thirty-five interviews were conducted across 29 unique cancer centers in 7 states. Program characteristics are detailed in Table 2. Among these cancer centers, six sites (21%) were NCI-designated cancer centers, and nearly half (45%) were non-NCI-designated, CoC-accredited facilities. Less than half of the programs were in an urban county (45%), with 34% in a RUCC 4–6 county and 17% in a RUCC 7–9 county. Roughly three-fourths (76%) of programs had at least one financial navigator/counselor, and approximately one-fifth (21%) of programs had social workers who also provided financial support for cancer care.

Table 2:

Cancer Center Site Characteristics

	N (%) (n=29)
Cancer Center Type
NCI-designated	6 (21%)
Non-NCI-designated, CoC-accredited	13 (45%)
Non-CoC-accredited	8 (28%)
Freestanding	2 (7%)
Rural-Urban Continuum Code (RUCC) of Site Locationa
RUCC 1–3 (urban)	13 (45%)
RUCC 4–6 (non-metro/rural)	10 (34%)
RUCC 7–9 (non-metro/rural)	5 (17%)
Multiple	1 (3%)
NCORP Site, Yes	11 (38%)
Catchment Area Size
Single County	6 (21%)
Multiple Counties	19 (66%)
Entire State/Multiple States	4 (14%)
Treatment Services Provided
Blood and/or Marrow Transplant	11 (38%)
Chemotherapy (Infusion)	29 (100%)
Chemotherapy (Oral)	28 (97%)
Clinical Trials	16 (55%)
Immunotherapy	24 (83%)
Psycho-oncology Services	14 (48%)
Radiation Oncology	23 (79%)
Supportive Treatments (Complementary/Palliative Services)	19 (66%)
Surgical Oncology	21 (72%)
Number of Financial Navigators/Counselors at cancer center
0	7 (24%)
1–3	17 (59%)
4+	5 (17%)
Number of Centers Reporting Additional Services/Staff that Provide Financial Assistance
Social Workers	6 (21%)
Nurses (Navigators, Case Manager)	5 (17%)
Other Navigation/Counseling	8 (28%)
Pharmacists	2 (7%)
Billing or Other Office Support	4 (14%)
Internal Programming	12 (41%)
External Programming	3 (10%)

^aThe U.S. Department of Agriculture Economic Research Service 2013 rural-urban continuum codes scheme categorizes metropolitan counties by the population size of their metropolitan area and nonmetropolitan counties by degree of urbanization and adjacency to a metropolitan area. (https://www.ers.usda.gov/data-products/rural-urban-continuum-codes).

Note: Non-NCI, CoC-accredited programs include those cancer programs that have received accreditation from the Commission on Cancer but are not NCI-designated Comprehensive Cancer Centers or NCI-designated Network Cancer Programs. This category includes programs such as Comprehensive Community Cancer Programs, Integrated Network Cancer Programs, etc. https://www.facs.org/quality-programs/cancer/coc/accreditation/categories

Participant characteristics are detailed in Table 3. Nearly half of participants (46%) were age 40–49, primarily female (89%), and White (89%). Thirty-seven percent had training in social work, 46% had a master’s degree or higher, and 49% received training specific to their role from their formal education. Four themes related to current best practices, immediate needs, and clinical and policy areas for intervention emerged from the data analysis and are discussed in detail below.

Table 3:

Participant Characteristics

	N (%) (n=35)
Age
<40	9 (26%)
40–49	16 (46%)
50–59	4 (11%)
60+	5 (14%)
Not Provided	1 (3%)
Female, Yes	31 (89%)
Hispanic ethnicity, Yes	1 (3%)
Race
White	31 (89%)
Black	3 (8%)
Other	1 (3%)
Discipline of Training
Social Work	13 (37%)
Nursing	5 (14%)
Finance/Business	6 (17%)
Other (Public Health, Pharmacy, etc.)	12 (34%)
Highest Degree Obtained
Some College/Associate Degree	7 (20%)
Bachelor’s Degree	12 (34%)
Master’s Degree or Higher	16 (46%)
Number of Years Working at Current Site
1–2 Years	6 (17%)
3–4 Years	7 (20%)
5–6 Years	5 (14%)
7–10 Years	7 (20%)
10+ Years	10 (29%)
Type of Training Received for Role
Training from Formal Degree	17 (49%)
Training from Accredited Program	10 (29%)
On the Job Training	6 (17%)
Self-Study	11 (31%)
No Specific Training	5 (14%)
Other	16 (46%)
Job Titlea
Care Coordinator	2 (6%)
Clinical Director	2 (6%)
Education and Resource Director	1 (3%)
Financial Counselor	4 (11%)
Social Worker	7 (20%)
Hospital Financial Administration	3 (9%)
Navigator	6 (17%)
Program Manager/Research Coordinator	2 (6%)
Not Provided	10 (29%)

^aTwo participants held multiple job titles.

Current Best Practices

Participants were asked to identify the most helpful or impactful resources they currently used to assist patients with financial difficulties as best practices. Participants from rural and urban centers reported similar best practices. Participants frequently mentioned the National Comprehensive Cancer Network’s (NCCN) Distress Thermometer and Problem List¹⁵as a way to detect patients experiencing financial hardship. Conducting an education session tailored to patients’ specific financial needs and costs of care was identified as the most helpful way to educate patients about available resources. Several participants also mentioned that these methods were most effective when conducted after the patient has had time to process news of their diagnosis and treatment needs.

Cost of care conversations between members of the healthcare team and patients were identified as a best practice. However, participants’ responses were mixed in terms of who should initiate cost of care conversations. Although some preferred that clinicians initiate conversations about financial needs with patients, others preferred if clinicians referred patients to financial navigators/counselors who have the training and resources to initiate and guide patients through cost conversations.

In addition to distress screening and patient education, participants mentioned practices to make financial assistance resources more accessible and useful for patients, including creating resource lists tailored to patients’ individual needs and providing telemedicine-based financial needs consultation to patients in rural primary care clinics so that patients did not have to travel to the cancer center.

One of the things that we’re doing ‐ we just started ‐ is doing telemedicine to even more rural clinics, particularly out east of us so that we can give consultation to a primary care clinic out in the rural areas…so, we’re accessing the frontier counties and trying to provide telemedicine for them and helping them understand that we can assist them with travel and lodging and things like that if they come here for treatment.

(Rural, COC-accredited center staff)

Participants also discussed the importance of using tracking methods, such as using Excel spreadsheets, to keep track of patients’ financial needs and status of financial assistance applications. One participant mentioned that their site had developed an electronic system to track patients as they navigate financial assistance services. However, they said that this system was very new and they were still determining what metrics would be meaningful to examine.

Immediate Needs

Several participants shared immediate needs they would like to see addressed to help patients and their families to cope/deal with the financial aspects of cancer treatment. Participants working at centers that did not currently have formal financial navigator roles discussed the importance of creating positions for financial navigators and hiring additional staff into those positions. Even participants working at centers that have financial navigator roles mentioned the need for additional financial navigators/counselors to be able to meet patient demand for those services.

Maybe if we just had one [financial navigator] focused just on financial [needs] for our cancer patients, and that’s all they’ve done is help, maybe set up payment…which you know, that’s what our financial counselor’s for, but she’s for the entire hospital. And so she is so consumed.

(Rural, non-COC-accredited center staff)

Participants also described immediate needs for more community engagement to increase awareness among community members and patients about available financial assistance services. This included hiring lay navigators or community health workers, conducting general community outreach, and developing and/or increasing advertising about the availability of financial assistance services.

I understand the role of the nurse navigator but I think it’s really short sighted not to have lay navigators or professional navigators engaging with patients because they relate to us in a different way. We’re not the white coat…I had so many patients tell me things that they didn’t ever mention to their doctor or the care team.

(Urban, NCI-designated cancer center staff)

Another cancer care staff working at a rural, non-CoC-accredited center stated, “I think there could be more community involvement. Such as, events…we try to hit those to do colon [cancer] prevention and screening events, but definitely financial literacy at those would be a big plus.”

Opportunities for Intervention

Additionally, participants offered a variety of suggestions for ways to improve how cancer centers address financial toxicity or hardship among cancer patients in general, particularly those from rural communities. Many participants voiced how important it was to be proactive in starting conversations with patients about financial needs, including consistent screening, and communicating as a team when patients screen positive for financial hardship. These participants perceived staff and clinicians as being fearful or overly cautious in bringing up finances with patients and their families.

I think we need to not be afraid to bring it [finances] up to them and let ‘em know that it could be an issue and that it may not be today, but we’re here for you to see what we can do to help you through this any way we can.

(Rural, COC-accredited center staff)

Additional staff training was identified as a need to help broach the subject of costs of cancer care with patients. Participants also identified that it was important to have regular team meetings to discuss what options are available to help patients with their financial needs.

Suggestions for other interventions also revolved around needs for access to and communication regarding information about financial resources. Participants described the need for more financial assistance resources as well as more places where they could search for and locate information to assist different types of patients with specific financial concerns. Resources, particularly those from smaller community organizations, tended to fluctuate in their availability, creating difficulty for participants to keep track of which ones still exist. In addition to maintaining comprehensive directories of available financial resources, one participant also felt there should be a formalized network of financial navigators around the country who could support each other and share information.

I think if there are other programs out there that we can refer people to, that would be helpful to know. I guess I’m not aware if there are other agencies or things that do support financially those patients. If there is, we’re not well-informed, I guess, but maybe there’s just not. I know because we do what we can, but we have limitations, too.

(Rural, non-CoC-accredited center staff)

Specific resources that were mentioned by staff included transportation and lodging options (particularly for patients from rural communities) and financial assistance to offset the cost of treatment. Several participants spoke to the difficulty of finding transportation assistance for rural patients since sustaining such services can be costly due to the greater distance to cancer care facilities and more sporadic use.

We found that with our patients, that one of the most difficult things is finding affordable transportation. One of the frustrating things with our [regional area] bus is … I actually had one patient that it was [going to] cost him like $200 to go to the clinic and back to his hometown… whereas they were charging $25 if he wanted to get on the bus and go to [a different city] for the fare…it’s just frustrating … It’s like the prioritization is backwards.

(Rural, CoC-accredited center staff)

A few participants specifically mentioned the high cost of radiation oncology and that offsetting the cost of radiation therapy was very difficult due to the lack of available resources.

Radiation oncology is very costly, and there’s not a lot of resources for those patients. Though we are able to at times provide some funding, it’s on a very minimal scale…there is a high demographic of those patients who truly need the help, that are only receiving radiation and there really is nothing that we most often times can provide them.

(Urban, CoC-accredited center staff)

Policy Areas for Intervention

Several participants also spoke to macro-level improvements to the healthcare system that they believed would help address financial toxicity and hardship experienced by cancer patients. Participants mentioned the need for healthcare system reform to ensure that all patients receive equitable, quality, and affordable care. This included more inclusive qualifications for Medicaid, reducing monthly insurance premiums, improving insurance coverage, and negotiating pharmaceutical prices.

Participants also voiced concerns over patients or caregivers’ jobs being impacted due to missing work for treatment or caregiving responsibilities. One participant mentioned the need for better employment protection laws to prevent this from happening.

I wish that there was something that protected their job. I’ve had a couple patients that just hit me so hard that the minute they got diagnosed with breast cancer, they got fired or laid off. I wish that there was protection for those people that are working…they should be protected in their employment.

(Urban, CoC-accredited center staff)

Discussion

By interviewing cancer center staff who provide financial navigation services across 29 different cancer centers and geographic locations, we identified existing strategies to address financial toxicity of cancer care and participants expressed what gaps and needs remain in support of cancer patients. Best practices exercised by participants in the various cancer centers included the use of screening tools and tracking systems, patient education visits with financial navigators, and access to tailored financial assistance resources. Immediate needs included additional financial navigation staff, including those at the community level such as lay navigators and community health workers, to promote linkages to local supports. Highlighted clinical areas for intervention included proactive and early conversations about finances with patients, as well as the provision of financial hardship training and resources for financial navigators. Finally, participants discussed the need for policy-level interventions to reform health systems, health insurance, and employment protection programs.

The systematic and proactive use of financial hardship screening methods can help identify patients at risk for experiencing financial hardship, facilitate dialogue around costs of care without the stigma or embarrassment associated with finances, and connect patients with appropriate financial assistance resources, if available.¹⁵ The majority of cancer centers indicated that the use of the NCCN Distress Thermometer and Problem List helped them identify patients experiencing financial hardship. Across cancer centers, the timing and frequency of administering this tool was varied or unclear. The NCCN Distress Thermometer and Problem List is commonly used by cancer centers to assess multiple domains of psychosocial distress and is not specific to financial hardship.^15–17 As such, it lacks the ability to assess the material, psychological, and behavioral aspects of financial hardship.¹⁶ Over the years, specific financial hardship measurement tools have been developed for research purposes in oncology clinical settings including the Comprehensive Score for Financial Toxicity (COST),¹⁸ Breast Cancer Finances Survey (BCFS),¹⁹ and Socioeconomic Well-being Scale (SWBS).²⁰ Additional research is needed to compare these various tools to determine their specificity and sensitivity of accurately identifying patients experiencing financial distress in clinical settings across different geographies and whether their use translates to better outcomes for patients. This is especially important considering the unique financial barriers that rural cancer patients may face, such as higher travel-related costs and higher rates of uninsured status.^21,22

Financial navigators/counselors in this study indicated the use of tailored patient education sessions to help initiate discussions about costs of cancer care and increase awareness of available financial assistance resources. Providers and clinic staff can effectively ease the financial burden of patients by initiating cost of care conversations early in the patient’s plan of care.²³ Having access to regularly updated information on available financial assistance resources locally and nationally, as identified in this study, is also key to providing effective and efficient financial assistance services to patients. Few evidence-based programs exist to train providers and staff around having effective and culturally sensitive cost of care conversations in clinical settings.²⁴ Standardized training programs across cancer centers could help normalize these conversations and proactively address patient financial needs.

A particular challenge of enhancing access to financial services and resources for oncology patients and survivors residing in rural areas is geographic distance, which impacts access to transportation and access to technology and/or broadband internet.²⁵ Rural cancer survivors are more likely to experience financial problems related to their cancer than urban cancer survivors.^10,25 They are also more likely to forgo medical treatment due to the financial burden of cancer care and other out-of-pocket expenses such as high treatment-related travel costs due to geographical distance from healthcare services.^26,27 Most financial assistance services are provided in-person, on-site when a patient comes in for a visit and screens positive for financial hardship serving as a barrier for rural cancer survivors. Furthermore, proactive screening for financial needs is not standardized and implemented across programs consistently, serving as a barrier for financial navigators to identify financial distress early and to link patients to needed financial resources. Few participants in this study mentioned the use of telehealth technologies to provide financial consultation, which is rapidly being recognized and implemented as an essential tool for reducing socioeconomic and/or geographic disparities in cancer care delivery.²⁸ However, according to the CDC, only 60% of residents living in rural or tribal areas have access to telehealth programs due to limitations in high-speed internet connections.²⁹ These discrepancies have been further highlighted during the COVID-19 pandemic, indicating the need for alternative methods of facilitating distanced communication with rural cancer survivors (and its associate reimbursement) and continued advocacy around improving broadband internet access in rural regions.³⁰ Leveraging expanded access to broadband was one of the objectives of the 2016 President’s Cancer Panel on connected health, and NCI and the Federal Communications Commission have partnered to pilot symptom management programs in Appalachia and connected health approaches for cancer patients in areas with low broadband access.^31,32 Such approaches may also be helpful for assisting patients with financial concerns related to their diagnosis and treatment.

The need for additional financial navigation and counseling staff was emphasized as an immediate need among participants in this study. Although there is evidence to support the financial and practical value of utilizing lay navigators, not all cancer centers have been able to successfully establish and sustain these roles.^33,34 Such roles may also be lacking in medically underserved rural communities. Furthermore, lay navigator roles are loosely defined where social workers and patient navigators, without formal financial navigation/counseling training and education, are tasked with providing complex financial assistance services.³⁵ Although it is important to engage these staff roles to enhance the interdisciplinary approach to providing comprehensive financial navigation services, having designated and trained financial navigators is necessary.³³ Universal training programs and/or centralized resources for oncology financial navigators are needed to enhance these roles and services across cancer centers.

The combination of increasing costs of cancer treatment and insurance cost-sharing requirements puts an added financial burden on cancer patients. Over the last few years, attempts for health system reforms to reduce healthcare costs and improve quality have slowed down due to the continued, politicized focus on dismantling the Affordable Care Act. Furthermore, income and wages have not been trending upwards along with cost increases, requiring individuals to pay significantly more for their coverage than in the past.^36,37 The cancer patient population is especially impacted as many are unable to work while undergoing treatment and may be required to reduce work hours and/or leave their job.³⁸ This is further exacerbated among rural cancer patients who often experience loss or lack of employment opportunities and health insurance coverage, high out-of-pocket costs on a fixed budget, and less flexible work leave policies.^25–27 As indicated in this study, there is a lack of awareness around job protection laws among patients and providers, emphasizing the need to empower both groups with the knowledge to understand and advocate for their rights. Federal laws, such as the American Disabilities Act and the Federal Rehabilitation Act, as well as state laws, prohibit some types of job discrimination by employers.³⁹ While financial navigators/counselors may not be trained in the legal aspects of requesting job protections, they can help connect patients to legal advocates within the hospital or to local legal aid offices such as through a Medical Legal Partnership.⁴⁰ Continued advocacy around reforming health insurance programs, reducing costs of care, and improving quality are needed.

Limitations

Our study was not without limitations. Firstly, we interviewed cancer center staff about their experiences and did not include the perspective of the patients themselves. There is potential for selection bias as we only recruited from cancer centers who indicated having some type of staff role designated to addressing patient financial needs. As a result, programs represented in this study might be better equipped to address financial concerns of patients compared to programs without designated financial navigation roles. Furthermore, only four cancer centers had trained financial counselors dedicated to addressing patient financial needs, and other centers had other staff members who provided financial assistance services as only part of their job. While we were unable to collect data on number of staff and percentage of staff effort dedicated to providing financial assistance for oncology patients, we were able to include diverse perspectives of staff helping patients with their financial needs. Our CPCRN sites had differing levels of success in recruiting participants; however, we did not keep track of those who declined to participate or were unreachable. Despite these limitations, strengths of this study include the representation of seven different states and a notable number of rural cancer centers.

Conclusion

Over the years, cancer centers have made strides in improving patient access to financial navigation services and resources. Although advancements have been made, areas of need still remain, including systematic and standardized screening, proactive initiation of cost of care conversations, additional trained financial navigation staff, addressing rural healthcare access disparities via telehealth and quality internet access, and policy advocacy strategies to improve access to financial resources for cancer patients. Implementing early and proactive methods to screen for and address financial needs of patients is essential to improving health outcomes of cancer patients. Additional programs and research are needed to help establish systematic and standardized methods to enhance financial navigation services, especially for underserved rural communities.