Availability and Accessibility of Cancer Care Delivery Approaches to Reduce Financial Toxicity of Rural and Urban Cancer Patients in Kentucky

May 2022 Vol 13, No 5
Jean Edward, PhD, RN, CHPE
Assistant Professor, College of Nursing; Nurse Scientist
Markey Cancer Center, University of Kentucky, Lexington, KY
William Bowling, BA
Department of Psychiatry, University of Kentucky, Lexington, KY
Holly Chitwood
College of Nursing, University of Kentucky, Lexington, KY
Robin Vanderpool, DrPH
College of Public Health, University of Kentucky, Lexington, KY

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Background: Cancer care delivery approaches to address financial toxicity among cancer patients are not well-established, especially in rural communities.

Objectives: To identify healthcare staff perspectives of financial toxicity experienced by cancer patients and to examine staff- and systems-level cancer care delivery approaches for addressing financial toxicity, with a focus on rural cancer survivors in Kentucky.

Methods: We conducted key informant interviews using a semistructured interview guide with cancer center staff who provided financial navigation and/or assistance to oncology patients and their caregivers at 15 cancer centers in Kentucky.

Results: Findings from this study revealed several key factors related to the availability and accessibility of cancer care delivery approaches at patient, staff, and system levels for reducing financial toxicity and improving access to care for rural and urban cancer survivors. Participants perceived high financial toxicity among cancer patients, especially in rural regions, related to the high cost of cancer care, as well the patients’ limited ability to engage in cost-of-care conversations, low cost-related health literacy, and challenges in navigating cancer care. The availability of trained financial navigators/counselors dedicated solely to assisting the cancer patient population was limited, as was the use of standardized and proactive screening methods for financial toxicity. While in-house and external financial assistance programs were frequently tapped into, there were limitations in the navigators’ ability to provide cost estimates based on insurance coverage and in assisting patients with applying for health insurance. Gaps in cancer care delivery approaches to reduce financial toxicity of patients included enhanced transportation options, additional financial navigation staff, early assessment of patient financial barriers and concerns, increased cost transparency, and enhanced cost-of-care conversations between patients and clinicians.

Conclusion: Establishing sustainable oncology-designated financial navigation roles is imperative to expanding patient support and improving health and financial outcomes of cancer patients. Future research is needed to gather evidence that informs programs targeted at mitigating financial toxicity of cancer patients in rural communities.

Cancer-related financial toxicity, or the undue financial burden and stress that patients face related to cancer care costs, is directly associated with poorer health-related quality of life,1 decreased survival,2 treatment compliance,3 and increased symptom burden and mortality.4 As one of the costliest health conditions in the United States, cancer patients have a greater risk of experiencing financial toxicity compared with those with other chronic illnesses.5 Experiences of financial toxicity are further exacerbated among rural cancer patients, which in part could be related to limitations in access to and availability of financial assistance resources, among other contributing factors.6,7

To help address the financial needs of cancer patients, cancer centers across the United States have implemented strategies to deliver financial assistance services at the point of care. In a 2019 survey of 63 National Cancer Institute (NCI)-designated cancer centers, the majority indicated that their patients experience some type of financial toxicity8; 95% of centers reported using standardized tools and methods of screening for financial need, but only 82% practiced a proactive approach to communicating the availability of financial navigation or counseling services to their patients. Ninety-three percent of NCI-designated cancer centers reported the need to improve financial navigation services, with the need to increase financial navigation staffing as a top priority. In another study of NCI’s 220 Community Oncology Research Program sites, only 50% reported having a financial navigator designated to serve the cancer population at their site.9 Despite the existing need for financial assistance and navigation services among cancer survivors, it is important to note that not all cancer centers have access to financial navigation or counseling staff and/or resources. This is especially true for cancer centers located in rural and other underserved regions that may be geographically isolated and are limited in resources and capacity to provide comprehensive financial navigation services.

Purpose

There is limited research examining the characteristics and delivery of financial navigation and counseling practices specifically tailored for rural cancer survivors. Study objectives were to identify healthcare staff perspectives of financial toxicity experienced by cancer patients and to examine staff- and systems-level cancer care delivery approaches for addressing financial toxicity, with a focus on rural cancer survivors in Kentucky. Kentucky leads the nation in cancer incidence and mortality and is known to have greater cancer disparities in rural, Appalachian regions of the state.10-12 Forty-two percent of Kentucky’s population resides in rural areas, and 17% live below the federal poverty level.13 Appalachian residents have lower levels of education and income compared with non-Appalachian residents of Kentucky and with the nation. These socioeconomic factors also contribute to higher financial toxicity experienced by Appalachian cancer survivors, making it imperative to identify the financial assistance programs offered in Kentucky cancer centers.14

Methods

Qualitative methods using key informant interviews were used to examine the availability and accessibility of cancer care delivery approaches to reduce patient financial toxicity related to accessing cancer care. Between February and June 2019, purposeful sampling methods were used to recruit staff from 15 cancer centers in Kentucky to participate in key informant interviews. These staff members were 18 years or older and assisted patients with financial needs. During the study period, these cancer centers were part of the Markey Cancer Center Affiliate Network, a collaboration of community hospitals that receive programs and services from the Markey Cancer Center, the only NCI-designated cancer center in Kentucky. Participants who met the inclusion criteria were sent e-mails with a link to the web-formatted informed consent that described the study and gauged interest. Participants received a $25 incentive for participating.

Using a semistructured interview guide, key informant discussions examined: (1) staff perceptions of cancer patient and survivor experiences of financial toxicity; (2) financial needs of the communities served, with a focus on rural communities; (3) availability of staff and roles in providing financial counseling related to cancer care costs; and (4) needed resources to support staff development or ability to effectively deliver financial assistance services. All interviews were audiotaped, transcribed, and analyzed using NVivo version 12 for MacIntosh. First, descriptive coding techniques were utilized to organize, categorize, and contextualize data. Second, analytic coding using line-by-line analysis was employed to identify emerging patterns and categorize concepts and themes.15 Two coders (J.E. and W.B.) coded the data independently before projects were merged in NVivo. Themes and subthemes were discussed, and discrepancies were resolved based on interrater reliability scores (Kappa coefficients between .80 and 1 for all subthemes were retained) and the number of sources and references resulting in themes and subthemes that were included in the final analysis (Table 1) and results below.

Results

Participants included 11 financial counselors and navigators, 2 social workers, and 2 patient lay navigators (Table 2). For the purpose of this paper, all participants will be referred to as “cancer center staff” or “participants” and will be further identified in direct quotes by their unique titles and geographic location (ie, rural and urban, Appalachian and non-Appalachian). Rural-urban locations were defined by the US Department of Agriculture’s 2013 Rural-Urban Continuum Codes (RUCC) and were labeled as urban (RUCC = 1-3) and rural (RUCC = 4-9).16 Most participants reported working in their current role for 3 or more years (86.7%), were female (93.3%), and worked in cancer centers located in rural areas (60%). The majority of sites (86.6%) were accredited by the Commission on Cancer. Seven sites practiced proactive financial screening using the National Comprehensive Cancer Network Distress Thermometer or another psychosocial evaluation form.17


Four key themes were identified during data analysis and are discussed in detail below. Table 2 provides an overview of the themes and subthemes.

Theme I: Healthcare Staff Perceptions of Patient Financial Hardship Experiences

Participants from 13 sites (86%) noted financial toxicity as a byproduct of cancer treatment for cancer patients. Financial toxicity was described as stress associated with healthcare costs and unpaid bills, going into debt, missing or quitting work for patients and caregivers, and having to choose between utilities and paying for healthcare costs. Unexpected healthcare costs or surprise billing was another contributor to experiencing financial toxicity. All these factors were identified as contributing to reduced patient mental and physical quality of life. The impact of financial toxicity on healthcare decision-making related to delaying or foregoing treatment was emphasized:

I think it (financial toxicity) impacts [patients] greatly because sometimes they worry about costs and sometimes it will alter their decision to seek further treatment. They don’t want to leave their family with debt. It’s difficult even with the transportation, when they have to come here, they may come here multiple times throughout the month. Their family member has to bring them, which means they have to miss work and that kind of thing. They’re reluctant to do that. (Rural, Appalachian, oncology nurse navigator)

Participants at 11 sites (73%) also expressed patient challenges and barriers to having cost-of-care conversations due to being embarrassed to talk about finances. Pride in admitting financial shortcomings and/or accepting financial aid or assistance were identified as barriers to having effective cost-of-care conversations, especially for older patients:

…Some of our older patients, they don’t want to accumulate bills if they feel like they’re not able to pay them. They still feel like they’re responsible for those bills. But they just kind of have that mentality of, ‘Well, I’m not going to come if I can’t pay for it.’ They’re kind of on the fence about applying for financial assistance. I have had some patients that they feel like, ‘Well, I’m better off than what some other people [are].’ (Rural, Appalachian, financial counselor)

Theme II: Rural Community Financial-Related Concerns and Needs

All participants (100%) identified a range of social determinants of health contributing to rural cancer patients’ experiences of financial toxicity, including lack of employment opportunities, adequate health insurance coverage, transportation, and access to nutritious and affordable food options. Geographical isolation hindered the ability of rural cancer survivors to travel to and from their treatment facility, where in some cases they had to travel 4 to 6 hours roundtrip. Food insecurity was also identified as a pressing issue among rural cancer patients, especially elderly and low-income patients:

Number one, they will go without food and medication without telling anybody because they don’t want people to know that they can’t afford things...I see more hungry people here. And it’s not young people, it’s with old people. The young people who have kids, they get all the food stamps. The old people, if they make money at all, they don’t get any food stamps and/or $10 or $15, which isn’t really buying them any food. And our food pantry—they can only use [it] once every 3 months. (Rural, non-Appalachian, financial counselor)

Participants from 13 sites (86%) identified limitations in health literacy, specifically cost-related health insurance literacy, as a pressing concern for cancer survivors in general. These included limitations in understanding out-of-pocket costs (ie, deductible, premium, copay), awareness around personal finances, and managing costs of care:

…People I talked to do not understand it [health insurance] at all. So then when they come in for anything to be done, they’re like, ‘why is it so much, I don’t understand.’ And I have to sit down and break it down to them and, you know, explain it to them, because they just don’t get it explained to them by their employer or whoever, and especially with the senior citizens, with the Medicare or Medicare replacements, especially the Medicare replacements, because they think they have 2 insurances. (Urban, Appalachian, financial counselor)

Participants from 12 sites (80%) explicitly mentioned the complexities of helping find and maintain adequate health insurance coverage for cancer survivors, especially the elderly and those who transition from Medicaid to Medicare at 65 years and older. Participants identified this transition as being detrimental to patients’ finances due to their low health insurance literacy and unexpected changes in benefits and patient cost-sharing responsibilities (ie, premiums and copays) that they were not responsible for when enrolled in Medicaid:

Medicare really is a detriment to people if they have Medicaid, because it’s income based. As soon as they hit 65, they have Medicare. Well, then they have to go through this whole process. This is a real process for me because the Qualified Medicaid Beneficiary picks up $150, you know, for their Medicare, and then they have to buy a drug plan. It’s a process. People don’t understand that it takes time. And if they take $150 out of someone’s check who only makes $600, then that takes us 3 months to get that going because they didn’t realize this was going to happen to them. It is a struggle for those people. (Rural, non-Appalachian, financial counselor)

Concerns regarding the high cost of cancer care were discussed by 10 participants (66%). Even after insurance adjustments and in-house financial assistance, some rural patients were left with a percentage of their cancer care bills that they were unable to afford. Rural elderly patients are particularly at risk as they were identified as living on fixed governmental incomes, which placed them in the eligibility gap for some financial assistance programs. Participants noted that many patients were drowning in debt with lack of sufficient income to help cover costs of care, which resulted in forgoing treatment and denying needed services:

He [patient] come in complaining, ‘I’m in pain.’ The doctor offered him a scan. He’s like ‘no, let’s just wait…I got too many bills, I can’t afford another CT scan right now.’ Unfortunately, he finally got his CT scan after 5 months instead of at 3 months, and we just found out yesterday that it has metastasized to his liver. (Rural, Appalachian, oncology patient navigator)

Theme III: Available Financial Assistance Services and Resources

Eleven participants (73%) indicated that their ability to proactively identify and assist patients with financial needs was heavily dependent on interdisciplinary communication among members of the healthcare team, especially nurses and social workers. Most participants consulted with the interdisciplinary team to get a holistic view of a patient’s financial situation and connect patients to appropriate financial resources. Members of the clinical team also helped serve as a trusted liaison between the patient and the financial navigator.

All 15 sites (100%) had established income-based in-house financial assistance programs to aid cancer patients’ financial burden, including eligibility-based hospital discounts, sliding self-pay scales, charity donations, and gas and grocery cards. Fourteen sites (93%) also identified outside foundations as a consistent source of financial assistance for patients. The American Cancer Society, PAN Foundation, Healthwell Foundation, and CancerCare were commonly utilized for patient grants and copay assistance. Staff at 11 sites (73%) also frequently assisted patients with applying for copay assistance and discounted prescription prices through pharmaceutical assistance programs such as GoodRx. Staff in 8 sites (53%) explicitly mentioned assisting patients with finding and applying for health insurance programs. Three sites outsourced insurance application assistance to external organizations. Helping with health insurance was identified as a much-needed service that encouraged patients to seek timely treatment. In rural sites, in-house financial assistance programs are the most tapped into financial resource available to patients due to limitations in funding and resources:

I had one particular patient [who] said she wasn’t going to go forward with treatment because of the high amount that her deductible and out-of-pocket costs was. And so, I said we had the financial assistance program available here at the hospital, and that did relieve her because she did qualify for it, and she got 95% of adjustment [on her bills]. And she did go forward with treatment, where she wasn’t going to go forward with it before. (Rural, non-Appalachian, financial navigator)

Theme IV: Needed Financial Assistance Services and Resources

Access to affordable transportation was cited as the top needed financial resource for cancer patients by all 15 sites (100%), especially in rural regions where patients had to travel an average of 1 to 2 hours to access treatment with limited transportation options:

There is public transportation available in our county, but only to Medicaid patients. If they have just traditional Medicare, it’s not available. For a round trip to our radiation center it’s $67, and you’re doing it 5 days a week for 6 weeks, most of the time. Transportation’s a big barrier here. (Rural, Appalachian, oncology nurse navigator)

Participants at 11 sites (73%) reported challenges in keeping up with the demand of screening, assisting, and monitoring patients and available financial programs and resources. This was exacerbated in 8 sites (53%) where the navigator was responsible for the entire hospital and not primarily for cancer patients. Thirteen sites (86%) stated that hiring additional financial navigators or counselors with a focus on assisting cancer patients and caregivers was a vital resource need. Participants identified the unique aspects of cancer treatment, such as frequent visits for chemotherapy and/or radiation, that have high out-of-pocket costs even for those with adequate health insurance coverage. Having additional trained financial navigators dedicated to the cancer patient population was cited as a top priority:

I kind of feel like at times it’s a 2-person job. There is a lot. It’s kind of hard going kind of back and forth between trying to be proactive and touching those patients when they come in for their chemo education before their treatment starts and trying to catch that patient after they’ve had their chemo education. So, there [are] a lot of things that I’m trying to do to be proactive, but then there is also a lot of back-end work and a lot of follow-up. (Rural, Appalachian, financial counselor)

Ten sites (66%) emphasized the need for enhanced cost transparency within the health system and greater provider and staff engagement in cost-of-care conversations to help patients make informed decisions about their treatment based on their financial needs. Only 2 sites provided cost estimates to patients to help them understand and prepare for their costs of care, while others expressed challenges in providing cost estimates because of limitations in accessing health insurance coverage information and frequency of cancer treatment billing. The need for enhanced conversations around treatment plans within the context of the patient’s financial situation/needs was also emphasized:

I think more education, or more information provided from the doctors would be a biggie. I feel like the doctors should have more of a conversation with patients, especially on financial parts, letting them know up front, ‘Hey, chemo’s expensive.’ You know, just not leave that on us to do, but I feel like the doctors should take a little bit more responsibility for that. (Rural, Appalachian, oncology nurse navigator)

Discussion

Findings from this study revealed several key factors related to the availability and accessibility of cancer care delivery approaches at patient, healthcare staff, and system levels for reducing financial toxicity and improving access to care for rural and urban cancer survivors. Participants perceived high financial toxicity among cancer patients, especially in rural regions, related to the high cost of cancer care, as well as the patients’ limited ability to engage in cost-of-care conversations, low cost-related health literacy, and challenges in navigating cancer care. The availability of trained financial navigators/counselors dedicated solely to assisting the cancer patient population was limited, as was the use of standardized and proactive screening methods for financial toxicity. While in-house and external financial assistance programs were frequently tapped into, there were limitations in the navigators’ ability to provide cost estimates based on insurance coverage and in assisting patients with applying for health insurance. Gaps in cancer care delivery approaches to reduce financial toxicity of patients included enhanced transportation options, additional financial navigation staff, early assessment of patient financial barriers and concerns, increased cost transparency, and enhanced cost-of-care conversations between patients and clinicians.

Participants in this study noted concerns related to the high costs of cancer care and the inability to manage these costs, especially among rural cancer patients. Financial toxicity is a reality due to the rising cost of oncology care, estimated to reach $249 billion in 2030, with some cancer survivors spending more than 20% of their annual income on medical care.18 Zahnd et al found that nearly half of rural cancer patients reported financial problems related to their cancer in comparison with 38.8% of urban cancer patients.6 Similar to our study findings, Zahnd et al identified a range of social determinants of health impacting the financial burden of rural cancer patients, including loss or lack of employment opportunities, health insurance coverage, transportation challenges, high out-of-pocket costs on a fixed budget, and both food and medication insecurity.6 Furthermore, Spencer et al found that rural minorities had a higher burden of employment changes after being diagnosed with breast cancer, which led to patients forgoing treatment and denying needed services to avoid further debt, resulting in poor health outcomes.7 Future programs and policies should proactively support cancer survivors with managing indirect costs by implementing proactive screening and providing cost estimates earlier in the continuum of care so that patients can better prepare to manage their costs of care.

There was a strong perception among study participants of cancer patients feeling embarrassed to discuss personal finances and having difficulty admitting financial shortcomings and/or accepting financial assistance. Cost-of-care conversations were difficult for patients to initiate and participate in due to limitations in cost transparency at the system level and the ability of providers and healthcare staff to engage in informed cost-of-care conversations to help patients make informed decisions about their treatment. As corroborated in the literature, although patients want to discuss costs with their oncologists, they reported rarely or never engaging in cost-of-care conversations.19,20 Similarly, oncologists understand the importance of engaging in cost-of-care conversations, but they do not feel equipped with the knowledge, skills, and time or have the resources within their care teams to enhance cost-of-care conversations to address the sociolegal needs of patients.21,22 Provider initiation of transparent cost-of-care conversations is needed early in oncology care to help patients understand and appropriately plan for the cost of cancer care. It is crucial to use interdisciplinary team–based approaches that include clinicians, nurses, social workers, pharmacists, and financial navigators to help normalize cost-of-care conversations, improve patient outcomes, and increase financial benefits for patients.

In this study, the majority of the participants identified limitations in cost-related health literacy, including health insurance literacy and inability to navigate and manage costs of care, especially among the elderly transitioning from Medicaid to Medicare. Cancer patients of all ages must have adequate cost-related health literacy to make complex treatment-related decisions based on their financial needs.23,24 This includes understanding their costs of care, enrolling in a health insurance plan that meets their financial needs, and finding alternative sources of payment and financial assistance.25 Those enrolled in public health insurance programs such as Medicaid or Medicare often have less savings and assets as well as lower levels of cost-related health literacy, which further contributes to financial toxicity.18,26 Elderly patients transitioning from Medicaid to Medicare services at age 65 years and older face additional challenges due to changes in benefits and out-of-pocket costs (ie, being responsible for premiums and copayments they were not responsible for paying under Medicaid).27 Promoting cost-related health literacy through patient education programs and financial navigation can help patients understand and prepare for anticipated costs early in the continuum of care and access timely and appropriate healthcare services.

Participants in this study identified challenges in their ability to keep up with the demand of helping cancer patients address financial needs due to limitations in establishing and sustaining oncology-designated, trained financial navigators. In this study, cancer center staff in 9 sites were responsible for providing financial assistance for the entire hospital and not just the cancer center. Furthermore, lack of financial navigation training led to limited knowledge of available resources and linking patients to such resources. Similarly, in a 2019 study of 63 NCI-designated cancer centers, 40% reported a lack of staff awareness about existing financial navigation services, and 46% reported limited pathways/workflows to connect patients to existing financial services.8 Financial navigation can address many aspects of financial toxicity (eg, optimizing health insurance, assisting with out-of-pocket expenses, applying for disability or family medical leave) but still remains fragmented in cancer centers.28 Future studies and programs need to focus on enhancing training and education for financial navigators and establishing better care pathways and opportunities to proactively address patient financial needs across the cancer care continuum.

Limitations

Several participants provided financial navigation services to both oncology and non-oncology patients. Although interview guide questions asked participants to focus on needs and services provided specifically to oncology patients, it is possible that other patient experiences were reported inadvertently. Study findings represent perspectives in a sample of financial navigation staff from 15 cancer centers in predominantly rural communities of Kentucky using a qualitative approach. Therefore, findings are not generalizable to other cancer centers, regions of Kentucky, and/or the United States. Purposeful sampling methods could have introduced selection or sampling bias resulting in underrepresentation of financial navigation staff from other cancer centers (eg, urban regions) and their unique experiences.

Conclusions

Study findings revealed complex experiences of financial toxicity among rural cancer patients and gaps in staff- and systems-level cancer care delivery approaches for addressing financial toxicity in cancer centers in Kentucky. The current COVID-19 pandemic has exacerbated financial toxicity in cancer patients, especially in terms of prolonged unemployment, with implications for reducing access to employer-provided health insurance, less wages due to business closures, disease progression due to treatment delays or interruptions, and the additional health costs related to those infected with COVID-19.29 With the short- and long-term effects of the pandemic, cancer centers should enhance their financial navigation and assistance services to help address patient financial toxicity. Establishing sustainable and oncology-designated financial navigation roles is imperative to maintaining continued patient support. Future research is needed to inform programs and policies targeted at improving financial toxicity of cancer patients in underserved rural communities.

Funding

This research was supported by grant #IRG 16-182-28 from the American Cancer Society.

Acknowledgments and Declaration of Conflicting Interest

This research was supported by services of the Patient Oriented and Population Sciences Shared Resource Facility of the University of Kentucky Markey Cancer Center (P30CA177558) and Susan Refett, MSN, RN, CNOR(E), Director of Quality Assurance, Markey Cancer Center Affiliate Network, UK HealthCare, Lexington, KY. The authors have no conflicts of interests to declare.

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