Patient Perspectives on the Financial Costs and Burdens of Breast Cancer Surgery

PURPOSE:

Although financial toxicity is a well-documented aspect of cancer care, little is known about how patients narratively characterize financial experiences related to breast cancer treatment. We sought to examine these patient experiences through mixed methods analysis.

METHODS:

Women (≥ 18 years old) with a history of breast cancer were recruited from the Love Research Army and Sisters Network to complete an 88-item electronic survey including an open-ended response. Quantitative data were used to sort and stratify responses to the open-ended question, which comprised the qualitative data evaluated here. Descriptive statistics and qualitative content analysis were used to evaluate the financial costs and other burdens resulting from breast cancer surgery.

RESULTS:

In total, 511 respondents completed the survey in its entirety and wrote an open-ended response. Participants reported significant financial burden in different categories including direct payments for medical care and indirect costs such as lost wages and travel expenses. Treatment-related costs burdened participants for years after diagnosis, forming a financial arc for many participants. Discrepancies existed between the degree of financial burden reported on multiple-choice questions and participants’ corresponding open-ended descriptions of financial burden. Participants described a lack of communication surrounding costs with their providers and difficulty negotiating payments with insurance.

CONCLUSION:

Breast cancer care can result in ongoing financial burden years after diagnosis among all patients, even those with adequate insurance patient populations.

INTRODUCTION

Breast cancer is the second most common type of cancer diagnosed in women behind skin cancer, with approximately 280,000 new cases estimated in 2020 in the United States.^1,2 Annual healthcare expenditures for breast cancer are estimated to reach $20.5 billion in US dollars (USD) as of 2020, a 32% increase in spending from 2010.^3-5 As expenditures have increased, the burden of these healthcare costs has increasingly shifted to patients through cost-sharing in the form of rising deductibles, co-payments, and premiums. This is compounded by the higher proportion of costs dedicated to the continuing phase of care within the patient population with breast cancer as compared with other cancers, a reflection of improved survivorship across all stages that require continuous imaging surveillance and costly systemic treatments.^3,6-9 In addition to the increasing costs of direct payments for medical care, patients additionally experience indirect costs, such as lost wages from time off work, child care, or travel expenses.¹⁰ Financial toxicity, or the financial stress experienced by patients with cancer, is a known side effect of cancer care that has been associated with reduced quality of life, increased treatment nonadherence, and an increased risk of mortality.^11-15 In an effort to mitigate the impact of financial toxicity on patients with cancer, ASCO released a framework in 2009 encouraging providers to discuss costs with patients alongside the net health benefit of various interventions.¹⁶

Many women with breast cancer have multiple treatment options with consequently different financial implications. Patients with stage I-II disease can frequently choose between mastectomy with or without reconstruction and breast conserving surgery with radiation and can additionally opt for contralateral prophylactic mastectomy, despite its unproven survival benefit.^5,17-19 Although there is a minimal difference in risk of recurrence between these surgical options,^4,5,20-23 the proportion of patients opting for more extensive surgical management has increased,²⁴ leading to higher costs.²⁵ Yet patients may choose more intensive surgical treatment for many reasons despite higher costs, including appearance, recovery time, demands for future surveillance, advancing surgical techniques,^26,27 and a desire for peace of mind or the perception that more extensive surgery reduces risk of recurrence.^28,29

Limited research has been done to explore how patients consider out-of-pocket costs or how post-treatment financial toxicity affects quality of life and recovery.^27,30 Our previous work demonstrated that even in a well-insured patient population, treatment with bilateral mastectomy with or without reconstruction was significantly associated with increased debt, catastrophic financial burden, treatment-related financial hardship, and altered employment decisions as compared with breast conserving surgery.¹⁰ The purpose of this study is to further characterize patient-reported financial experiences related to breast cancer treatment through analyzing rich qualitative data and using quantitative data to sort, stratify, and further contextualize participants’ open-ended responses.

METHODS

Study Population

This study describes secondary analysis¹⁰ of a web-based survey of patients > 18 years old with breast cancer recruited from the Dr Susan Love Foundation Love Research Army (LRA), formerly known as the Army of Women, and the Sisters Network of North Carolina. The LRA aims to build connections between the scientific community engaging in breast cancer research and the LRA’s volunteers, which represent all genders with and without a history of breast cancer.³¹ Studies submitted to the LRA require funding and prior approval from the organizational Scientific Advisory Committee.³² The Sisters Network of North Carolina, which is part of a National African American Breast Cancer survivorship organization,³³ was approached for participation in an effort to increase diversity within our study cohort. Women received an e-mail invitation providing an overview of the study and detailing eligibility criteria. Male patients with breast cancer and those living outside of the United States were excluded. Data collection took place from January 20, 2017, to June 16, 2017. This study was approved by the Institutional Review Board (Protocol #00074944; December 29, 2016, to December 29, 2019).

Survey Design and Content

As described in our prior study,¹⁰ we developed an 88-item questionnaire in collaboration with patient advocates, which included both previously validated measures and novel questions developed and pretested for the purpose of this study.^34-37 Survey items assessed sociodemographic, clinical, and treatment data as well as a variety of women’s experiences with the financial aspects of surgery, including their consideration of costs when making a treatment decision for breast cancer surgery. Additional survey items asked participants about their overall financial well-being, health behaviors, employment, and personal sacrifice as a result of their cancer care.³⁶ Finally, at the end of the survey, women were given the option to write additional thoughts on their financial experiences with breast cancer treatment in a 1,000-character limit textbox. The estimated time of survey completion was approximately 30 minutes. Qualtrics software (Qualtrics, Provo, UT) was used to program the final survey. No patient incentive was provided.

Data Analysis

Open-ended responses were analyzed using a five-stage approach to conduct content analysis (familiarization, identifying a thematic framework, indexing, charting and mapping, and interpretation).^38,39 In the first stage, the research team read through all open-ended responses to identify initial coding themes and to become familiar with the data. The identified themes were used to develop an initial coding framework. Two investigators (L.J.F. and W.L.) conducted line-by-line coding of a sample of open-ended responses, and the team met to discuss the coding and modify the initial framework. Next, two independent coders (S.M.O. and S.D.T.) conducted line-by-line coding of all open-ended responses. After coding was completed, the team met to discuss themes, sort codes, and restructure the initial framework as similarities and differences were identified. In the final stage, the team identified major themes and associated quotes to summarize the results. Multiple meetings with the study team were held to discuss and affirm the analysis methodology and identified themes. NVivo (version 12.6.0) and Microsoft Excel were used to organize the qualitative data (version 16.35, Redmond, WA).

Open-ended responses coded for “Financial impact due to direct costs of medical care” were then sorted according to survey responses for years since diagnosis to assess for differences in financial burden by the time since diagnosis given the wide range in this metric within our study cohort. Furthermore, open-ended responses were compared with closed-ended responses on stated financial burden to assess for variations in patient reporting in different question types, since prior studies suggest that qualitative data may capture unique insights not seen in closed-ended questioning.⁴⁰ Stated financial burden was defined by responses on the Likert-scaled (no burden to catastrophic burden) survey item “How much of a financial burden did you experience as a result of your breast cancer treatment?” with the possible responses including no financial burden, slight, somewhat, significant, or catastrophic.¹⁰

RESULTS

Survey Participants

As previously described,¹⁰ all 109,168 members of the LRA group received an e-mail notification inviting them to participate in the study. Reflecting the composition of that group, this included individuals of all genders, with and without a history of breast cancer. There were 1,414 members who responded to the survey link, with 970 (69%) agreeing to participate.^32,41 Additionally, 50 women from the local chapter of the Sisters Network of North Carolina were approached for study participation and 23 (46%) agreed to participate. In total, 1,464 women received detailed information about the study and 993 (68%) agreed to participate, a response rate consistent with recent surveys through the LRA.^42,43 In total, 511 eligible women completed the survey in its entirety and wrote free-text responses at the end of the survey, which make up the analytic sample for data reported here. Demographic characteristics for this sample of 511 participants are summarized in Table 1. This cohort was 91% White (n = 463), 4% Black and/or African American (n = 22), and 4% Others, or more than one race (n = 23), with 1% who preferred not to answer (n = 3). The median age at diagnosis for survey participants was 50 years, with 68% of the sample diagnosed < 10 years ago at the time of survey (n = 346), 30% diagnosed over 10 years ago (n = 156), and 2% who did not answer (n = 9). The annual income was reported to be under $74,000 (USD) for 31% of participants (n = 157), between $74,001 and $125,000 (USD) for 30% (n = 151), and > $125,000 (USD) for 27% (n = 140), with the remaining 12% (n = 63) of participants preferring not to answer. Table 2 outlines key themes on patient perspectives in the open-text response item regarding breast cancer treatment costs; representative quotes are included. The average length of responses was 419 characters out of the 1,000-character limit.

TABLE 1.

Baseline Demographic, Clinical, and Treatment Characteristics (N = 511)

TABLE 2.

Key Themes Representing Patient Perspectives on Breast Cancer Treatment Costs

Financial Impact Due to Direct Costs for Medical Care

Cancer treatment can financially affect patients to varying degrees. Survey participants noted a range of experiences in the affordability of direct payments for cancer care, largely based on insurance type. Within the theme of financial impact due to direct costs for medical care, three distinct groups of patients emerged from the study cohort: those with adequate financial resources, limited financial resources, and inadequate financial resources.

Of the 511 participants included in this study, 313 (61.3%) respondents wrote about financial burden. Of the comments coded under this theme, 180 (57.5%) reflected adequate financial resources to cover all out-of-pocket expenses related to their cancer care. These respondents routinely expressed perceived privilege and gratitude in being able to pay for their care. Participants with limited financial resources (n = 99, 31.6%) reported that they were able to pay for all expenses of their cancer treatment but still incurred significant stress in doing so. Many respondents reported that they were faced with a situation in which they had to choose between significant financial burden and their health. In paying their cancer-related medical bills, respondents reported depleting their savings accounts, retirement funds, and borrowing money from friends and family. Despite these negative financial consequences, many respondents with limited financial resources simultaneously expressed gratitude for existing insurance coverage and their survival. Finally, women with inadequate financial resources (n = 34, 10.9%) often noted catastrophic financial damage as a result of treatment costs. For these women, breast cancer treatment resulted in irreparable financial damage, such as declaring bankruptcy or losing their home, to pay off medical debts.

The Financial Arc and Long-Term Impacts

There was a wide range of reported time since diagnosis in this study cohort (Table 1), with around 30% of the cohort diagnosed over 10 years prior to survey completion. This variation meant participants were approaching the topic of treatment costs from very different perspectives, with some women currently undergoing treatment, whereas others were decades out from their initial diagnosis at the time of survey completion. When sorting participant responses that directly mentioned financial impact by time since diagnosis, a financial arc in patient experiences emerged. Around the time of breast cancer diagnosis, women described uncertainty around treatment costs. As treatment progressed, participants reported increasing cancer-related financial burden as deductibles, co-payments, and other expenses accumulated. For some participants, these costs dwindled following the end of treatment. For others, this financial burden persisted for years, sometimes increasing with compounding debts long after the initial diagnosis, representing drawn-out financial arcs. Finally, participants living with metastatic breast cancer had a notably different shape to their financial arc, with increasing self-reported costs over time as participants remained in treatment indefinitely. Most participants noted difficulty in anticipating future costs, with many explicitly reporting stress and fear over unexpected costs associated with potential recurrences or unexpected treatment (eg, chemotherapy and exchange in breast implants).

Discordance in Stated Financial Burden

Most participants’ self-report of their financial burden on multiple-choice survey items aligned with the comments included in the open-ended responses. For example, one participant described being financially ruined with no way to recovery after surgery and appropriately selected catastrophic financial burden in response to the survey question “How much of a financial burden did you experience as a result of your breast cancer treatment?”¹⁰ Notably, we also observed discordance between the degree of a participant’s stated financial burden and their descriptive financial burden on open-ended response in 15 of 313 responses coded under the financial burden theme (4.8%). For example, one survey participant described owing $40,000 (USD) to her radiation providers, being harassed by the oncologist’s office and a collection agency for bill payment, and developing panic attacks as a result of this stress. However, on the survey, this participant chose slight financial burden. Another participant described anxiety and guilt surrounding the financial aspect of treatment, requiring her to use savings to cover all the costs and ask her family for financial support, but indicated somewhat of a financial burden on her survey response. Yet another participant noted that her family had spent thousands of dollars on treatment in addition to the thousands in lost wages and wrote, “I worry that a re-occurrence would bankrupt our family, and in that case, I would probably forgo treatment despite being a relatively young person”. This participant chose somewhat of a financial burden on her survey response.

Financial Impact Because of Indirect Costs

Regardless of treatment type or time since diagnosis, a common theme for survey participants was the unexpected indirect and hidden costs associated with breast cancer treatment, represented in 136 (26.6%) of responses. Participants reported that their breast cancer diagnosis resulted in career repercussions beyond lost vacation and sick time, for example, long-term professional opportunities or slowed or halted workplace promotions. In addition, hidden costs were broadly characterized. For some, the additional expense came from the frequent travel that was required to receive care from in-network providers. For others, the ancillary cost of wigs, new clothing, and other cosmetic products proved to be unexpectedly costly. One of the most significant and frequently reported hidden expenses was the time they needed to take off work to undergo treatment, leading to substantial lost wages and depleted vacation or sick time.

Cost Transparency and Communication

Many women (n = 42, 8.2%) reported a lack of cost transparency and communication; for some, cost discussions did not arise, yet in others, cost conversations were actively averted by patients or providers. Participants reported avoiding cost discussions because of the perceived association that cost of treatment correlated with the quality of care; thus, expressing an interest in reducing costs might negatively affect their treatment. One participant also reported that her oncologist verbalized that she would not discuss costs, for fear it would cloud her clinical judgment. Despite this, most survey participants reported a desire for cost transparency at the time of diagnosis and when facing treatment decisions along the continuum of care.

Navigating Insurance

Interacting with insurance was a key element of many participants’ self-reported breast cancer experience (n = 344, 67.3%). When compared with national averages, study participants were of higher socioeconomic status and education level, with many having pre-existing comprehensive insurance coverage. Several participants reported gratitude for their extensive insurance coverage that allowed them to receive breast cancer treatment with manageable out-of-pocket expenses. Additionally, several participants expressed frustration regarding the time and energy it took to negotiate insurance coverage of their treatment while managing the physical and mental debilitation that accompanies complex oncology treatment. Other women commented on the experience of changing insurance plans over the course of multiple different cancer diagnoses and the financial implications to their lives. These women experienced firsthand the financial devastation that can result from being underinsured, a reality made clearer after undergoing different rounds of treatment both with and without comprehensive coverage. Regardless of prior coverage, for many participants, the uncertainty of the changing national insurance landscape contributed to underlying stress and fear over potential coverage loss.

DISCUSSION

Our mixed methods study includes rich patient–reported narratives with a high proportion of surveyed patients choosing to share additional qualitative information about their financial experiences after breast cancer diagnosis and treatment. Notably, to our knowledge, our study is one of the first to explore the financial impact of treatment in women who are significantly removed from their initial time of diagnosis (> 10 years).⁴⁴ Despite this being a relatively socioeconomically advantaged convenience sample of patient advocates, our study cohort reported a wide range of treatment-related financial hardship anywhere from mild to devastating in their impact. Direct payments for medical care comprised a large proportion of this financial burden; however, indirect costs like travel, lost wages, and career stalls were reported as substantial contributors by this cohort. Overall, this study demonstrates the significant lasting financial impact that breast cancer treatment can have, affecting some patients decades after diagnosis, even in the presence of comprehensive insurance coverage.

Although other authors have attempted to quantify the financial impacts of a cancer diagnosis, few studies have examined the financial impact on patients more than ten years after diagnosis.⁴⁴ A 2013 cross-sectional mixed methods study by Stump et al⁴⁵ sampled a cohort of 400 well-insured patients representing a variety of types of cancer, most prevalent of which was breast cancer, with 35% of the cohort citing a primary breast lesion. This study demonstrated similar findings to our study: financial burdens affect patients from varying socioeconomic backgrounds, including economically advantaged patients. Although 13% of their sample consisted of participants at least > 10 years from cancer diagnosis, they did not report longitudinal financial experiences. Our characterization of the financial arc provides evidence for the ongoing, burdensome financial distress that can occur years after diagnosis, a finding that may invite interventions both during and well after cancer treatment. This may be particularly important for patients with breast cancer given the high rates and long duration of survivorship.³ Furthermore, the expansive and frequently multigenerational impacts of financial hardship, affecting entire households and caretakers in addition to patients,⁴⁶ and the limited opportunities for upward financial mobility in the United States⁴⁷ implore an urgent need to prevent significant downward financial trajectory resulting from a cancer diagnosis.

Notably, we found that lingering breast cancer–related financial distress was exacerbated by persistent and pervasive fear surrounding potential changes in healthcare coverage. This was similarly highlighted by Stump et al,⁴⁵ where survey participants who received coverage through the 2010 Patient Protection and Affordable Care Act (ACA) felt significant stress resulting from political threats to repeal the act. Additionally, the discrepancies in state variation in implementation of the ACA, including differential expansion of Medicaid across states, resulted in groups of patients with breast cancer who remained un- and underinsured even after ACA implementation. These patients continued to experience financial stress because of inadequate insurance coverage despite the changing national landscape.⁴⁸

The range of financial experiences captured in our study manifested in an observed discordance in responses between women’s multiple-choice responses categorizing their financial hardship and open-ended narratives. These discrepant responses may be due to participants’ desire to acknowledge their own financial privilege, leading them to select a financial burden level on their multiple-choice response that seemed less severe than the financial burdens their qualitative narratives would suggest. This pattern of expressing gratitude was also seen in a qualitative study by Bradley et al⁴⁹ examining the financial impacts of cancer care in a cohort of 20 patients with a primary malignant brain tumor. Here, patients noted how much more difficult their experiences would have been without insurance or assistance from other sources like community programs or friends and family. Additionally, gendered patterns of reporting financial hardship may also be contributing. A 2011 study of over 4,700 participants by Wiltshire et al⁵⁰ showed that women were less likely than men to report financial hardship, which the authors postulated could be due to recall bias or social desirability. Our cohort is particularly susceptible to this gendered bias given we included only women with a history of breast cancer. Because of these complex factors, we hypothesize that participants could have minimized their stated financial burden in this survey and that experienced cost burden may differ based on what the open-ended free-text data imply. Future studies are needed to more rigorously examine differences in qualitative and quantitative stated financial burden, in addition to future longitudinal research needed to document cost burden over time in patients with breast cancer to reduce recall bias. Additional studies could also include surveys of patient caregivers, where applicable, to assess for any differences in stated financial burden between patients and their partners.

Notably, patient-reported costs related to their cancer care more likely reflect the lived experiences of breast cancer that are poorly characterized in claims data or review of patient payments. Our study emphasizes the impact of indirect costs in both the short- and long-term following diagnosis. Although existing studies have acknowledged the burden of lost wages, travel expenses, and ancillary costs (eg, wigs and postmastectomy bras),^51,52 few have examined how these burdens change over time. A 2010 study by Jayadevappa et al⁵³ examined the indirect and out-of-pocket costs in patients with prostate cancer longitudinally over 2 years, finding these accounted for 60% of the total cost burden for patients. Future research should replicate this design in patients with breast cancer and monitor patients for a longer period of time to assess the full impact of indirect costs. Furthermore, these data should be used to advocate for insurance policy changes to cover indirect costs such as wigs and travel expenses.

Of note, our cohort is demographically skewed toward White women with advanced education, insurance coverage (28% by Medicare in this sample), and higher household incomes (median > $74,000 [USD] with 27% reporting household incomes > $125,000 [USD] in this sample). By comparison, the United States had an adjusted median household income in 2018 of approximately $61,000 (USD),⁵⁴ and 17.8% of the country’s population was covered by Medicare.⁵⁵ Despite this, many women expressed significant financial hardship because of breast cancer treatment, which is likely exacerbated in lower-income patients.^56,57 Additionally, members of the LRA and Sisters Network actively engage in research and survivorship efforts. Thus, although our findings indicate that even the relatively economically advantaged suffer from the financial toxicity of cancer care, these findings may not be generalizable and potentially underestimate the risk of this toxicity and level of patient activation when compared with the entire population of women with breast cancer in the United States. Second, our data rely on self-report and are therefore subject to recall bias. This is particularly notable for 30.5% of women in our study who were diagnosed > 10 years ago.

In conclusion, overall, in this mixed methods study, we found that breast cancer treatment is associated with significant patient-reported financial burden through direct and indirect financial losses, even in this relatively advantaged population of women after breast cancer. Notably, this burden exists for patients both during active treatment and years following diagnosis, impacting long-term financial health and professional development. Furthermore, our data suggest that differences exist between objective and subjective measurements of financial toxicity, suggesting that future research on this topic should take a multifaceted approach. Ultimately, this study demonstrates the importance of measuring and monitoring financial burden levels in patients long after their diagnosis and incorporating considerations of these burdens into treatment and surveillance plans aimed at holistic well-being.

AUTHOR CONTRIBUTIONS

Conception and design: Sachiko M. Oshima, Sarah D. Tait, Whitney Lane, Stephanie B. Wheeler, Rachel Greenup, Laura J. Fish

Financial support: Rachel Greenup

Administrative support: Rachel Greenup

Provision of study materials or patients: Rachel Greenup

Collection and assembly of data: Sachiko M. Oshima, Sarah D. Tait, Whitney Lane, Rachel Greenup, Laura J. Fish

Data analysis and interpretation: Sachiko M. Oshima, Sarah D. Tait, Christel Rushing, Terry Hyslop, Anaeze C. Offodile, Stephanie B. Wheeler, S. Yousuf Zafar, Rachel Greenup, Laura J. Fish

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Patient Perspectives on the Financial Costs and Burdens of Breast Cancer Surgery

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/op/authors/author-center.

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