Understanding cancer survivor cost communication experiences and preferences

Abstract

Purpose

Although cost discussions between cancer patients and their oncology providers are associated with lower out-of-pocket costs, patient experiences and preferences surrounding these conversations are relatively unexplored.

Methods

This qualitative study, conducted March–April 2022, assessed patient-provider cost communication in a convenience sample of cancer survivors aged 26–60 and less than 5 years from diagnosis. Semi-structured interviews were recorded, transcribed, and coded using iterative content analysis to identify emerging patterns and themes.

Results

Survivors (N = 20) were 65% female and 75% non-Hispanic White with a median diagnosis age of 47.5 years. Main themes included survivor cost conversation experiences and preferences, with subthemes such as cost information seeking, advantages and disadvantages of cost discussions, and optimal timing for financial discussions. Most patients (65%) preferred to discuss costs before initiating cancer treatment but after a cancer diagnosis. One patient shared, “Not at diagnosis. That is the most devastating time of your life…” Most survivors (90%) wanted family involved in cost conversations for ease of understanding and recollection. When asked whether their oncologist should consider out-of-pocket costs during treatment planning, 60% of survivors preferred their oncologist to consider costs to aid patients in financial planning, avoiding unexpected expenses, and decreasing stress/anxiety.

Conclusion

Patient preferences regarding cancer treatment cost-related communications are highly individualized. Information on how to assess patient cost communication preferences during cancer care delivery is needed to address cost-related challenges facing cancer survivors.

Introduction

Cancer-related financial hardship is a well-established issue for cancer survivors as the cost of cancer care continues to increase nationwide [1, 2]. This hardship includes (1) psychological distress about paying for medical expenses or concerns about inability to work; (2) material challenges including medical debt or a loss in income and productivity; and (3) behavioral coping strategies, including delaying or avoiding medical care due to cost or not adhering to prescription medications [3–5]. These consequences are associated with decreased quality of life, increased risk of poor health outcomes, and increased risk of death [6–9].

Although there is extensive research on financial hardship among cancer patients, fewer studies have focused on discussions between survivors and their cancer care team about health insurance coverage and out-of-pocket expenses for treatment [10]. Most member institutions (94%) within the National Comprehensive Cancer Network state the need for improved financial advocacy in cancer care [11]. However, research suggests cancer care providers are largely unaware of the financial stress cancer puts on their patients or do not initiate discussions about costs [8, 9, 12]. Effective communication about cancer costs is an indicator of high-quality cancer care, indicating a need to explore which healthcare team member survivors prefer to speak with about health insurance coverage and out-of-pocket costs as well as the optimal context and timing for such discussions [13–15]. Therefore, this study qualitatively explored cancer survivor preferences and experiences regarding cost-related communication during cancer care. Gaining deeper insight into these areas can help guide cancer cost communication pathways and other logistics related to receiving cancer care, which may ultimately reduce the financial burden on survivors.

Methods

Study overview and recruitment

This study, conducted March–April 2022, was a secondary, qualitative analysis of a parent explanatory, sequential mixed methods study exploring cost communication preferences for commercially insured cancer survivors [1].

Survivors for the parent study were contacted by a market research organization and invited via email to complete an online questionnaire to determine eligibility, which included (1) being within 5 years of a cancer diagnosis, (2) having private or commercial insurance during cancer treatment, and (3) being aged 26–60 at time of diagnosis. This insured that survivors in this study were making their own health insurance decisions when receiving cancer treatment. Survivors considered a dependent on parental insurance or those receiving Medicare and/or Medicaid were excluded.

Eligible survivors were contacted by telephone to confirm screening data; verbal consent was obtained, and compensation was a $75 Amazon gift card. The study was classified as exempt from human subject’s research by the National Institutes of Health Office of Institutional Review Board.

Semi-structured interviews

Twenty survivors were selected from a sample of 80 participants from the larger mixed methods study to complete remote qualitative interviews. Selection varied on health insurance literacy level and cancer type to ensure diverse participants for this qualitative study. The interviewers had no previous relationship with the participants. All 20 survivors consented and completed the in-depth interview. Twenty participants gave sufficient information power for qualitative inference and saturation was reached as no new codes or themes appeared [16]. To ensure confidentiality, survivors were not permitted to activate their webcams, and participant identification numbers were used instead of names. The study team leads and interviewers (HP, CW) have advanced training on designing interview guides, conducting qualitative interviews, and coding and analyzing qualitative data. Both interviewers have a doctorate degree in public health and have extensive experience in health and risk communication and qualitative methodology (HP) as well as decision-science methodologies and quantitative modeling (CW).

The interview guide for this study, and qualitative codebook, was created using Vardell’s Integrated Framework for Health Insurance Literacy as a guide [17]. The interview guide was tested with an expert in qualitative research for clarity and understanding prior to starting the study. Final interview topics covered cancer treatment experiences, health insurance coverage and navigation, patient-provider communication, and cost informationseeking behaviors. All interviews were recorded, transcribed, and cleaned for text accuracy.

Variables

Data collected included self-reported age at diagnosis (within past 5 years), sex (male, female), race/ethnicity (Hispanic/Latino, Non-Hispanic Black, Non-Hispanic White, Other), highest level of education (< college degree, ≥ college degree), annual household income (≥ $75,000, < $75,000), health insurance status (private/employer sponsored, ACA exchange, other), and cancer type (breast, cervical, colorectal, lung, other).

Qualitative analysis

An inductive approach was utilized to develop the study codebook. Independent coders with expertise in health communication/health literacy (HP) and health economics (CW) each coded the 10 interviews they conducted. Then, 20% of transcripts were double coded (two from each coder) and interrater reliability was assessed (κ = 0.9). Discrepancies were discussed and a consensus was reached. The final version of the codebook was reviewed and finalized by the study leads. Iterative content analysis identified key themes and patterns between interviews. Sociodemographic characteristics were described using medians and interquartile ranges for continuous variables and frequencies for categorical variables. All qualitative analyses were conducted using NVivo for Windows.

Results

Sample characteristics and emergent themes

Survivors were a median 47.5 years old at diagnosis (IQR 35–53), 65% female, and 75% non-Hispanic White. The majority (85%) had a college degree or higher, 85% had private or employer-sponsored health insurance, and 75% had annual household income ≥ $75,000 (Table 1). Major cost communication themes included (1) survivor cost conversation experiences, including subthemes on experiences with cancer cost information seeking, advantages and disadvantages of discussing costs with cancer care team, and treatment decision-making, and (2) survivor cost conversation preferences, including subthemes on preferred cancer care team member to discuss costs, optimal timing for cost conversations, inclusion of friends or family in cost conversations, oncologist responsibility in discussing cost, and take-home cost informational materials (Table 2).

Table 1.

Survivor demographics (N = 20)

Characteristic	n (%)
Age at diagnosis (median, SD)	47.5 (35–53)
Sex
Female	13 (65)
Male	7 (35)
Race and ethnicity
Hispanic/Latino	3 (15)
Non-Hispanic Black	1 (5)
Non-Hispanic White	15 (75)
Other	1 (5)
Education level
< College degree	3 (15)
≥ College degree	17 (85)
Annual household income
< $75,000	5 (25)
≥ $75,000	15 (75)
Health insurance status
Private or employer sponsored	17 (85)
ACA exchange or other	3 (15)
Cancer type
Breast	6 (30)
Cervical	2 (10)
Colorectal	3 (15)
Lung	2 (10)
Other	7 (35)

Table 2.

Survivor cost experiences during cancer treatment

Theme	Subtheme	Code	Quote
Survivor cost conversation experiences	Survivor experiences with cancer cost information seeking	Never received information	Nobody brought up like the cost. It’s kind of funny when I go to the dentist. They always have that special person that’s like, okay, this is the cost of the treatment. These are your payment options. But that was not the case with the cancer
		Cost communication delivery	So, I would say I’ve learned from the insurance company themselves
		Emotional/cognitive burden	I was so stressed and worried about the cancer, and because the financial things right now was not a big issue… I was more focused on my health
	Advantages of discussing costs with cancer care team	Avoiding unexpected costs	You’re not surprised. It’s nothing more than going somewhere and getting a procedure finding out that the co-pay is more than you have at the moment
		Stress and anxiety relief	Being able to talk to somebody will relieve anxiety and stress so that you can focus on your health and not worry about finances
		Financial planning	I think it could definitely help and really just with planning
	Disadvantages of discussing costs with cancer care team	Uncomfortable sharing finances	Some people might not want to be talking about the financial troubles with everybody, so I think that that will be the disadvantage
		Financial fatalism	You could have a real sticker shock and become very fatalistic in looking at the fact that you can’t afford what you’re going to experience. It can look to someone like a death sentence
	Decision-making in cancer treatment	Impact of cost on treatment decisions	I can’t imagine the conversation telling somebody you can be broke or dead… But it’s real sad, though, that for the average person you have a choice to be broke or dead
		Shared decision-making	I would take my doctor’s lead, and then I would go home and do my own research [before making a shared decision]
		Treatment prioritization	It was definitely my chance of recovery

Theme 1: Survivor cost conversation experiences

Survivors shared their cost conversation experiences during cancer care delivery, including experiences with cost information-seeking, advantages and disadvantages of cost conversations, and decision-making in cancer treatment (Table 2).

Survivor experiences with cancer cost information seeking

Survivors communicated their experiences seeking cancer treatment cost-related information and noted the lack of cost-related information, where they found cost information, and the emotional and cognitive burden associated with cost information seeking. Six survivors received no information about costs from their cancer care team. A survivor noted, “I don’t recall them sending me anything ahead of time or even getting ‘it may cost about this’. There was no information. That is something I did not like.” Another commented, “I guess they just assumed I had insurance, so it wasn’t going to be an issue.” Three survivors asked the front desk and were referred to their insurance company: “I start the questions [with my doctor] and then they seem to all refer me to their support staff who would then refer me to my insurance company.”

Survivors discussed who delivered their cancer treatment cost information. A minority of patients (n = 7) learned about treatment costs from their cancer care team or administration and billing staff. For example, one survivor mentioned speaking with the billing department and three shared their oncologist brought up their out-of-pocket costs. Although these survivors had a conversation with their cancer care team, all except the survivor who inquired with billing learned their out-of-pocket costs from their insurance company.

Sixteen survivors learned about out-of-pocket costs from their insurance company. More than half (n = 9) called their insurance company, while seven others used their employee insurance handbook and the insurance company’s website. One survivor used a mix of resources—the handbook, an insurance agent, and provider’s office—to “ensure that a certain thing was covered just to make sure I understood it.”

Despite not receiving information from their cancer care team, two survivors did not actively seek cost information due to being stressed about having cancer. One survivor explained: “I didn’t even worry about it. You know, I’m so used to my insurance kind of knowing and the cancer part, I was so stressed and worried about the cancer.”

Advantages of discussing costs with cancer care team

Survivors identified three main benefits of discussing insurance and out-of-pocket costs with their cancer care team. First, avoiding unexpected costs was important to survivors because knowing expenses in advance provided peace of mind and allowed them to focus on their health rather than financial concerns. One survivor stated, “It gives you like peace of mind to know what you’re expecting. If you are discussing possibilities for financial things that are down the road, it could be helpful.”

Secondly, the reduction of stress and anxiety were mentioned as advantages. One survivor emphasized the importance of reducing stress during cancer care: “I think a lot of patients will not tell you that they have financial concerns because of pride, or fear, or anxiety. So being able to talk to somebody will relieve anxiety and stress so that you can focus on your health and not worry about finances… If you’re stressed out, then you can’t focus on your health.”

Third, survivors noted that conversations could help with financial planning, such as coordinating with family to develop a payment strategy. One survivor spoke with family, stating “This [cost] is what we’re up against and this is what I’m going to be needing [to pay] every two weeks.”

Disadvantages of discussing costs with cancer care team

Although most survivors mentioned no disadvantages to discussing costs with their cancer care team, two expressed hesitancies due to the personal nature of finances: “Sometimes it’s not what you want to be talking about, it’s embarrassing. You don’t want other people knowing your business.”

Additionally, the impact of financial fatalism—the belief that the high costs of cancer treatment are impossible to pay and efforts to address financial challenges are futile—was noted: “You could have a real sticker shock and become very fatalistic in looking at the fact that you can’t afford what you’re going to experience. It can look to someone like a death sentence.” Others shared how people might “opt to die” rather than pursue treatment due to being uninsured or fear of leaving family with debt.

Decision-making in cancer treatment

Twelve survivors experienced shared decision-making with their oncologist about their cancer treatment and noted they would do so again. Survivors represented shared decision-making as a collaborative discussion with their oncologist where they were actively engaged in the decision-making process after learning about potential treatment options. Two made final treatment decisions themselves, while three highlighted family involvement. Meanwhile, seven survivors stated their oncologist decided the cancer treatment for them, though one survivor reflected, “I think if I had to do it again, I would probably bring in a family member.”

Several survivors highlighted the difficult financial choices patients face during treatment, and how cost can impact treatment decisions. For example, a survivor shared “You can kind of decide if your life is worth saving or not. I mean, for some people, I’m going to be dead in six months and my heirs are going to have $300,000 of debt. Or I could just suffer and be dead in three months. And for some people that’s a real thing they have to weigh. Is it worth it? Is it worth the debt?” One survivor shared a personal story: “My father had cancer in the brain. We weren’t going to do the chemo just because he was old… If you saw it on the paper and saw what it was going to cost. You might decide a little differently about how you might want to be treated.”

When making treatment decisions, no patient solely based their decision on cost, but rather prioritized other aspects of survival. For example, two survivors mentioned the importance of treatment costs as an important secondary consideration: “Chance of recovery, but the financial stuff out-of-pocket cost was right up there too just because it’s something I always worried about.” Twelve survivors prioritized survival: “That’s the only reason I did chemo for three years. Because when I was diagnosed, and I did my chemo, they told me that my chance of survival that it would be 93 percent.” Additional concerns included hair loss, fertility, and choosing the least invasive treatment. Three survivors highlighted preventing recurrence: “For me, it was sort of really what I thought was my best shot to not have to have it recur, just to make it go away, and stay away.”

Theme 2: Survivor cost conversation preferences

Survivors shared their preferences with cost conversations during cancer care delivery, including their preferred cancer care team member to discuss costs, optimal timing for cost conversations, inclusion of friends or family in cost conversations, oncologist responsibility in discussing cost, and take-home cost informational materials (Table 3).

Table 3.

Survivor cost conversation preferences

Theme	Subtheme	Code	Quote
Survivor cost conversation preferences	Preferred cancer care team member to discuss costs	Financial advisor	Maybe a financial advisor [that] handled the insurance companies and the payment processes, that would be good
		Cancer care team	The nursing staff that works with the doctor, because I feel like the doctors have better things to do than worry about who’s paying for what, you know?
		Front desk staff	I have no problem discussing it with the oncologist or the front office. It doesn’t matter to me
	Optimal timing for cost conversations	At diagnosis	I think that it is at the time of diagnosis. It’s a really scary moment, which is made much more scary by the unknown financial element
		Before treatment	I don’t know if the time of diagnosis is the right time… I think it should be after the diagnosis. But when determining a course of treatment
	Inclusion of friends or family in cost conversations	Familial support	It would be nice for my husband to be involved in the conversation [about cancer costs]
	Oncologist responsibility in discussing cost	Awareness and transparency of costs	I think they should just be able to give a couple of different treatments so it’d be good for somebody that was worried about out-of-pocket cost
		Balancing insurance and treatment cost	Honestly, if there’s something equally as good that’s a lot cheaper, then certainly, that would be a consideration
		High out of pocket costs	If you can’t afford it, you contact us and we will find a way to get it paid
		Oncologist role	I just want to hear the treatment options from the doctor. I just want them to tell me what they think is best for me. I don’t even want them to worry about what they cost or what the insurance is going to be
	Take-home cost informational materials	Personalized materials and digital tools	Personalized notes of discussion for the actual person, their actual insurance, their finances

Preferred cancer care team member to discuss costs

When asked with whom they would feel most comfortable discussing treatment costs, most survivors preferred a member of their cancer care team. Specifically, seven survivors preferred speaking with a financial navigator, while two mentioned a social worker or nurse navigator. Six preferred speaking with medical members of their cancer care team, such as their pharmacist (1), nurse (2), or oncologist (3). Seven survivors stated they felt comfortable with the front desk or billing staff, while three were also fine with their insurance company. Four participants preferred at least two options (i.e., pharmacist, financial counselor, and/or insurance company).

Optimal timing for cost conversations

Survivors discussed optimal timing for addressing cancer treatment costs. Seven favored discussing it at diagnosis with reasons such as the “unknown financial element” or “knowing early on and just getting it over with.” However, 13 survivors felt at diagnosis was too overwhelming, emphasizing the need to process everything first. One survivor reflected, “Not at diagnosis. That is the most devastating time of your life. You don’t remember stuff. You’re under so much stress; that’s not a good time. I was under so much stress and fear and worry I did not need that at that time.”

Inclusion of family or friends in cost conversations

Most survivors (n = 18) preferred to involve family or friends in discussions about costs. Many suggested bringing a spouse or friend as a “second set of ears” to help them remember important details. Even a survivor without support during their cancer experience felt that “it’s always best to have at least one person. Preferably your significant other or if not if your child, your mom, or your best friend…To make sure that the information is correct.”

Patient perspectives on oncologists’ responsibility in discussing costs

Eight survivors felt oncologists should focus solely on providing the best treatment without being influenced by financial considerations. Survivors worried about lower quality of care if an oncologist considered cost. For example, they believed it is not the oncologist’s role to “worry about what the insurance bureaucrats will allow” and their responsibility is “to take care of the patient.”

The remaining survivors (n = 12) believed their oncologist was responsible for considering their health insurance and out-of-pocket costs when discussing treatment options. A need for cost awareness and transparency was emphasized, especially for patients with a “limited insurance plan” or “worried about out-of-pocket costs.” Survivors suggested a balanced approach where oncologists present both high- and low-cost treatment options with similar effectiveness. One survivor noted, “Well, I don’t think money should drive the best course of treatment…I believe different options could be presented with different financial impacts.” Another survivor gave a detailed example: “Look for the best plan for the person, and if they know that A and B both get the same results and B’s a little bit less expensive, at least talk to the person and be like, look, I know you don’t have insurance. This will cost you $60,000. A lot of patients have success with it. This other one is just as good as the $60,000. It costs $500,000.”

Survivors felt patients should be informed if a treatment has significant out-of-pocket costs. One expressed frustration with being offered unaffordable treatments, stating: “if it’s a certain treatment is going to cost a large out-of-pocket co-payment… it’s almost like falsehood for offering this drug that, unfortunately, I cannot afford.” Survivors also explained that patients should receive assistance in finding solutions to manage financial burdens. Additionally, discussions about treatment options should distinguish between essential treatments and those that are less critical.

Take-home cost informational materials

The last topic was the desired take-home information on out-of-pocket costs. Fourteen survivors wanted a personalized handout or table with “an estimate, maybe a range, of what that translates in terms of out-of-pocket costs.” They also wanted details about “payment help, any programs that are available for people who are not going to be able to afford even the minimum treatment costs with their insurance.” Additionally, eight survivors mentioned the value of a website or virtual app for learning additional information: “I think an app is definitely something that would be helpful or even just a printout just to say, ‘Hey, this is what we anticipate.’”.

Discussion

This qualitative study explored two major themes: (1) survivor cost conversation experiences and (2) survivor cost conversation preferences regarding communication about cancer-related out-of-pocket costs. Most survivors in this sample never discussed their out-of-pocket costs with their cancer care team. Of those who did, the majority were referred to their insurance company. The No Surprises Act, a federal law effective as of January 2022, mandates Good Faith Estimates are to be provided to uninsured, out-of-network, or self-paying patients for information regarding their expected out-of-pocket costs before health services are delivered [18]. However, confusion surrounding out-ofpocket costs exists even for insured patients, and implementation of the Act varies across health systems, highlighting the need for cancer care systems to implement trained staff to foster transparent conversations about costs and provide financial support services for those facing financial hardship [10, 19, 20].

Many survivors in this study preferred to discuss out-of-pocket costs before starting treatment rather than at diagnosis. Initiating cost conversations before treatment may offer survivors better control with managing their out-of-pocket costs [21]. These results suggest the need to include trained personnel to discuss health insurance coverage and out-of-pocket costs before starting treatment.

More than half of survivors in this study preferred to speak with a member of their cancer care team about out-of-pocket expenses. Specifically, six preferred to speak with a medically trained cancer specialist (i.e., oncologist), while seven preferred a financial navigator. Financial navigators are relatively new members of the cancer care team who have the skills and training to discuss the costs of treatment and health insurance coverage, and assist with potential financial stressors during cancer treatment, such as unemployment [22, 23]. The National Cancer Institute defines financial navigation as helping survivors learn what health insurance will cover, understand out-of-pocket expenses and create feasible payment plans, and improve access to healthcare [24]. Currently, there is a crucial need to implement oncology financial navigation programs to prevent or reduce financial hardship within each domain (psychological impact, material challenges, coping strategies) to improve overall quality of life [25, 26]. These programs are especially needed among populations with low medical resources, such as rural, racial and ethnic minority, and low-income communities, and for survivors experiencing financial fatalism due to intense financial distress. Research shows that financial navigation programs are feasible and acceptable; however, it is important to hire designated and trained financial navigators compared to assigning the role to a lay navigator, or another member of the cancer care team, with little or no experience in financial counseling [27–30]. Furthermore, research shows that a patient-centered financial navigation intervention—integrated into an existing care coordination model—can decrease the burden of cancer-related financial toxicity among patients with financial distress [27]. Future research can examine financial fatalism among cancer survivors and how it impacts cost conversations and cancer treatment decision-making.

Similar to other research, more than half of survivors in this study were comfortable with oncologists presenting treatment options of varying costs, provided they were equally effective [31]. Additionally, research shows that 51–61% of patients preferred physicians to factor in costs when making treatment recommendations [32–34]. A study on physician attitudes similarly revealed that 94% felt they should offer all treatment options, costly or otherwise [31]. However, despite both treatment options being equally effective, only 28% of patients opted for the lower-cost treatment [35]. This may indicate a lack of trust in or understanding of lower-cost options in addition to treatments differing on side effects or administration frequency, all of which underscore the need to emphasize the importance of cost-related treatment decisions during shared decision-making appointments. By including financial navigators in this process, patients may have a better opportunity to express fears and discuss questions about treatment costs.

Forty percent of survivors in this study worried that quality of care would decline if oncologists considered cost when deciding on cancer treatment. Similarly, 34–42% of patients feared they might not receive the best care if cost was a factor, highlighting the need to assess patient preferences before treatment discussions [19, 32]. This worry is important to note as 84% of US-based oncologists acknowledged that their patients’ out-of-pocket costs influenced their treatment discussions [36]. Financial navigators could assist patients in understanding their out-of-pocket treatment costs after oncologic treatment discussions. Addressing these concerns may help patients feel more confident in choosing an affordable treatment without compromising quality of care.

When interpreting the findings of this study, it is important to consider several limitations. Survivors in this sample were generally well-educated with higher incomes. Higher-income survivors may encounter fewer financial challenges compared to lower-income survivors, potentially leading to different responses when discussing out-of-pocket expenses related to cancer care. Due to time and financial constraints, member checking was not completed after the study concluded. Additionally, participants were recruited through a market research organization, which could indicate that these survivors are more likely to take an active role in managing their healthcare. Finally, the results cannot be generalized to the general population, nor Medicare beneficiaries or youth/young adults on parents’ insurance. Future quantitative studies can examine the generalizability of these qualitative results as well as examine cost-communication with youth/young adults or Medicare beneficiaries.

Conclusion

This exploratory qualitative study highlights the experiences and preferences of cancer survivors about cancer cost communication. Our findings show that few survivors discussed out-of-pocket costs with their cancer care team during treatment, which they would prefer to experience in future situations. Despite few having cost conversations, survivors still preferred to discuss costs with a member of their cancer care team, with most specifying a financial navigator. Additionally, survivors highlighted the importance of addressing cost information before starting treatment, as early conversations could alleviate financial stress, support treatment decision-making, and improve survivors’ locus of control.

Given these findings, there is a pressing need to implement structured financial support services within cancer care settings. Establishing specialized roles, such as financial navigators, to facilitate cost conversations can ensure that survivors are better informed and equipped to handle the financial aspects of cancer care. Additionally, integrating cost discussions into the treatment planning process could improve both patient satisfaction and outcomes by reducing the psychological and material impact of financial hardship. Ultimately, enhancing cost communication and providing tailored financial support may lead to better overall care experiences for cancer survivors, potentially mitigating financial hardship and improving quality of life.

Data availability

No datasets were generated or analysed during the current study.