"You're really walking along the razor's edge": A meta-synthesis on the existential cost of breast cancer related to financial toxicity.
메타분석
1/5 보강
Cancer-related financial toxicity (FT) is a challenge of living with and beyond breast cancer (BC).
- 연구 설계 systematic review
APA
Paltrinieri S, Schiavi M, et al. (2026). "You're really walking along the razor's edge": A meta-synthesis on the existential cost of breast cancer related to financial toxicity.. Breast (Edinburgh, Scotland), 86, 104705. https://doi.org/10.1016/j.breast.2026.104705
MLA
Paltrinieri S, et al.. ""You're really walking along the razor's edge": A meta-synthesis on the existential cost of breast cancer related to financial toxicity.." Breast (Edinburgh, Scotland), vol. 86, 2026, pp. 104705.
PMID
41579560 ↗
Abstract 한글 요약
Cancer-related financial toxicity (FT) is a challenge of living with and beyond breast cancer (BC). A systematic review and meta-synthesis was conducted to report the experience of individuals with BC regarding cancer-related FT. Data were searched in MEDLINE, Embase, Cinahl, Scopus, PsycINFO, and Web of Science from inception. Eligibility was restricted to original qualitative studies. We performed a meta-synthesis by generating interpretative themes and a model of cancer-related FT. Thirty-two studies were included, encompassing 1080 individuals with BC. Of these studies, 17 were conducted in North America (719 individuals), nine in South, East, and West Asia (238 individuals), two in Oceania (53 individuals), and four in Northwest Africa (70 individuals). Five themes were identified: (i) the existential cost of cancer, (ii) the impact of insurance complexity, (iii) the need for timely and accessible information, (iv) seeking possible help, (v) negotiating daily life. The review highlights the lack of original qualitative studies conducted in Europe. Socioeconomic status, insurance, and employment amplify inequalities and shape the experience of FT. The interpretative model could support individuals with BC and providers' communication.
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Introduction
1
Introduction
Breast cancer (BC) is the second most frequent tumour worldwide, with 2.3 million new cases and eight million prevalent cases in 2022 [1]. BC is the third tumour type with the highest economic costs and the first one in females [2]. Early diagnostic methods, effective treatments, and changes in population growth will contribute to the progressively increasing trend [1].
Cancer-related financial toxicity (FT) is a major challenge for individuals living with and beyond BC [3]. Defined as both objective financial burden and subjective distress from cancer treatment [4,5], FT can affect access to care [6], financial stability, and overall health [7]. It involves out-of-pocket medical expenses, non-medical costs like transportation, and income loss due to sick leave and/or job loss [8]. FT varies by country, depending on the healthcare system characteristics, such as coverage, out-of pocket costs, and social protection mechanisms [9]. For example, the lack of universal coverage shifts costs to patients, often resulting in financial hardship or increased reliance on family and social support networks. Moreover, while FT is more common in low- and middle-income countries, over 30 % of individuals with BC in high-income countries also report FT [9]. Psychological effects, such as anxiety, fear of bankruptcy, and guilt over burdening family, can worsen FT [10], especially when caregivers lose income [11]. FT often leads to coping strategies like cutting essential spending [12] or skipping care [11].
Although cancer type is not a clear FT risk factor [9], individuals with BC may face greater financial needs due to prolonged multimodal treatments and heterogeneous side effects [10], such as lymphedema [11] or the need for breast reconstruction [12]. Furthermore, individuals with BC who are younger in age, have Hispanic ethnicity in the United States context, lower income [13,14], and are migrants [15] seem to have a higher risk of FT. Moreover, as compared to their male counterparts, females have a lower employment rate, particularly in low-income countries, work fewer hours per week on average, which affects their incomes [16], and are at higher risk of unemployment [17]. These social disparities are further exacerbated by the unequal distribution of non-paid work (i.e., household management, children) [18].
Over the past decades quantitative and qualitative studies have addressed cancer-related FT in individuals with BC [19,20]. Although qualitative research explores complex experiences shaped by social and cultural factors, no systematic review has focused on the broad lived experience of cancer-related FT and its daily impact on individuals with BC.
Gathering patients’ perspectives from diverse contexts can reveal the deeper meaning of cancer-related FT. Understanding their experiences is imperative to plan tailored interventions to reduce FT.
This systematic review and meta-synthesis addressed the following research questions: i) what is the experience of individuals with BC concerning their cancer-related FT? and ii) what are the reported consequences on daily life?
We aimed to synthetize the experiences of living with the cancer-related socioeconomic consequences from the perspectives of individuals with BC.
Introduction
Breast cancer (BC) is the second most frequent tumour worldwide, with 2.3 million new cases and eight million prevalent cases in 2022 [1]. BC is the third tumour type with the highest economic costs and the first one in females [2]. Early diagnostic methods, effective treatments, and changes in population growth will contribute to the progressively increasing trend [1].
Cancer-related financial toxicity (FT) is a major challenge for individuals living with and beyond BC [3]. Defined as both objective financial burden and subjective distress from cancer treatment [4,5], FT can affect access to care [6], financial stability, and overall health [7]. It involves out-of-pocket medical expenses, non-medical costs like transportation, and income loss due to sick leave and/or job loss [8]. FT varies by country, depending on the healthcare system characteristics, such as coverage, out-of pocket costs, and social protection mechanisms [9]. For example, the lack of universal coverage shifts costs to patients, often resulting in financial hardship or increased reliance on family and social support networks. Moreover, while FT is more common in low- and middle-income countries, over 30 % of individuals with BC in high-income countries also report FT [9]. Psychological effects, such as anxiety, fear of bankruptcy, and guilt over burdening family, can worsen FT [10], especially when caregivers lose income [11]. FT often leads to coping strategies like cutting essential spending [12] or skipping care [11].
Although cancer type is not a clear FT risk factor [9], individuals with BC may face greater financial needs due to prolonged multimodal treatments and heterogeneous side effects [10], such as lymphedema [11] or the need for breast reconstruction [12]. Furthermore, individuals with BC who are younger in age, have Hispanic ethnicity in the United States context, lower income [13,14], and are migrants [15] seem to have a higher risk of FT. Moreover, as compared to their male counterparts, females have a lower employment rate, particularly in low-income countries, work fewer hours per week on average, which affects their incomes [16], and are at higher risk of unemployment [17]. These social disparities are further exacerbated by the unequal distribution of non-paid work (i.e., household management, children) [18].
Over the past decades quantitative and qualitative studies have addressed cancer-related FT in individuals with BC [19,20]. Although qualitative research explores complex experiences shaped by social and cultural factors, no systematic review has focused on the broad lived experience of cancer-related FT and its daily impact on individuals with BC.
Gathering patients’ perspectives from diverse contexts can reveal the deeper meaning of cancer-related FT. Understanding their experiences is imperative to plan tailored interventions to reduce FT.
This systematic review and meta-synthesis addressed the following research questions: i) what is the experience of individuals with BC concerning their cancer-related FT? and ii) what are the reported consequences on daily life?
We aimed to synthetize the experiences of living with the cancer-related socioeconomic consequences from the perspectives of individuals with BC.
Methods
2
Methods
2.1
Search strategy and selection criteria
This systematic review and meta-synthesis is reported according to the ENTREQ guidelines (Appendix A, p 1) [21]. It was prospectively registered in PROSPERO (CRD42024534127). Bibliographic search was pre-planned and conducted by an information specialist (M.C.B.), a qualitative methodologist (L.G.), and two healthcare professionals (S.P. and S.C.). The search strategy (Appendix B, p 3) was customized for the electronic databases MEDLINE, Embase, Cinahl, Scopus, PsycINFO, and Web of Science, and they were searched from inception to May 2025. Filters were not applied. Records were also identified through citation searching. We included studies involving adult individuals (≥18 years) diagnosed with BC, regardless of disease stage or survivorship phase, that reported findings on cancer-related FT and its impact on daily life. We included any original study using either a primary or secondary data analysis in which qualitative methodology was used to collect data. We excluded studies with mixed cancer populations and mixed method studies when it was not possible to clearly identify the voice of individuals with BC or to extract the qualitative data, respectively. We excluded studies that were not published in English.
Three researchers (S.P., B.B., and M.T.) conducted title and abstract screening using Rayyan to manage the process [22], and any disagreement was resolved with S.C.
2.2
Quality assessment
The methodological quality of the included reports was assessed independently by two reviewers (S.P. and L.B.), and any disagreement was resolved with S.C. Appraisal was performed by using the Critical Appraisal Skills Program (CASP) checklist for qualitative research [23,24]. This checklist assesses the methodological quality of qualitative studies based on eleven criteria, including the validity of findings, appropriateness of the qualitative methodology and study design, recruitment strategy, theoretical framework, data collection methods, researcher-participants’ relationship, ethical considerations, data analysis, clarity of results, and the overall value of the research. The CASP checklist provides an overall quality level with no cutoff score.
2.3
Healthcare system contextualization
We framed the included reports within macro-structural contexts according to the widely accepted categorization proposed by Bohm et al. (2013) grounded in the theoretical assumptions developed by Wendt et al. (2009) to define healthcare system models [25,26]. The framework is primarily based on financing and healthcare coverage, two pillars of the regulatory dimension, one of the key criteria used to classify healthcare systems. Coverage refers to the inclusion of the population, in whole or in part, within public and/or private healthcare systems, while financing refers to the funding of healthcare through public and/or private sources. Included reports were framed in the following macro-structural contexts:•private health system is predominantly coordinated by private market actors, does not guarantee universal coverage, and relies on fragmented private insurance schemes or out-of pocket payments;
•national health system is predominantly based on universal health coverage, with residual out-of-pocket costs. Although formal coverage exists, indirect payments and services not covered by the system persist,
•under-resourced or poorly institutionalized health system is characterized by limited social protection and a high reliance on informal networks.
This categorization was intended as a contextual framework to support the interpretation of the findings, acknowledging that participants' experiences of FT are shaped by, though not explicitly articulated in terms of, these macro-structural factors.
2.4
Data extraction and meta-synthesis
Data were extracted independently by three authors (S.P., S.C, and L.B.), who agreed in advance on the information to be selected. The following data were extracted from each of the included reports: country of origin and healthcare system, journal title, study's aim(s) and design, recruitment setting, sampling strategy, data collection period, strategy and setting, data analysis, summary of findings, and sample characteristics.
In the context of this systematic review, we adopted a meta-synthesis approach to synthesize data, consistent to produce an interpretative integration and re-elaboration of qualitative findings from original studies. Meta-synthesis is a well-established methodology that transcends the mere aggregation of findings, instead offering a higher-order conceptualization through which novel interpretative insights can emerge [[27], [28], [29]]. Given the complexity and multifaceted nature of cancer-related FT, which intersects with structural, psychological, and relational domains, an interpretative approach was necessary to capture the depth and nuance of participants’ experiences. The phenomenon of FT in individuals with BC is not reducible to financial burdens alone, but involves identity negotiations, existential distress, and socio-economic inequalities. Thus, a meta-synthesis allowed us to move beyond listing barriers or coping mechanisms, and instead to identify deeper, latent constructs that shape how individuals experience, make sense of, and respond to FT.
To perform the meta-synthesis, both the quotes of individuals with BC (first order constructs) and the interpretation of the authors (second order constructs) of each original study were considered for extraction. The quotes reported under the headings “results” of each study were manually extracted and reported in an Excel table. During a meeting, S.P., B.B., M.S., A.C., and S.C. collaboratively coded the quotes of two original studies using line-by-line coding of the first and second order constructs to identify labels. Then, a third study was coded independently, and labels compared. The remaining studies were coded independently into existing or new labels. Subthemes and themes were inductively established by grouping labels and interpreting their meanings into a interpretative model. Disagreements were resolved with L.G. and S.D.L. The dataset is available in the repository.
Methods
2.1
Search strategy and selection criteria
This systematic review and meta-synthesis is reported according to the ENTREQ guidelines (Appendix A, p 1) [21]. It was prospectively registered in PROSPERO (CRD42024534127). Bibliographic search was pre-planned and conducted by an information specialist (M.C.B.), a qualitative methodologist (L.G.), and two healthcare professionals (S.P. and S.C.). The search strategy (Appendix B, p 3) was customized for the electronic databases MEDLINE, Embase, Cinahl, Scopus, PsycINFO, and Web of Science, and they were searched from inception to May 2025. Filters were not applied. Records were also identified through citation searching. We included studies involving adult individuals (≥18 years) diagnosed with BC, regardless of disease stage or survivorship phase, that reported findings on cancer-related FT and its impact on daily life. We included any original study using either a primary or secondary data analysis in which qualitative methodology was used to collect data. We excluded studies with mixed cancer populations and mixed method studies when it was not possible to clearly identify the voice of individuals with BC or to extract the qualitative data, respectively. We excluded studies that were not published in English.
Three researchers (S.P., B.B., and M.T.) conducted title and abstract screening using Rayyan to manage the process [22], and any disagreement was resolved with S.C.
2.2
Quality assessment
The methodological quality of the included reports was assessed independently by two reviewers (S.P. and L.B.), and any disagreement was resolved with S.C. Appraisal was performed by using the Critical Appraisal Skills Program (CASP) checklist for qualitative research [23,24]. This checklist assesses the methodological quality of qualitative studies based on eleven criteria, including the validity of findings, appropriateness of the qualitative methodology and study design, recruitment strategy, theoretical framework, data collection methods, researcher-participants’ relationship, ethical considerations, data analysis, clarity of results, and the overall value of the research. The CASP checklist provides an overall quality level with no cutoff score.
2.3
Healthcare system contextualization
We framed the included reports within macro-structural contexts according to the widely accepted categorization proposed by Bohm et al. (2013) grounded in the theoretical assumptions developed by Wendt et al. (2009) to define healthcare system models [25,26]. The framework is primarily based on financing and healthcare coverage, two pillars of the regulatory dimension, one of the key criteria used to classify healthcare systems. Coverage refers to the inclusion of the population, in whole or in part, within public and/or private healthcare systems, while financing refers to the funding of healthcare through public and/or private sources. Included reports were framed in the following macro-structural contexts:•private health system is predominantly coordinated by private market actors, does not guarantee universal coverage, and relies on fragmented private insurance schemes or out-of pocket payments;
•national health system is predominantly based on universal health coverage, with residual out-of-pocket costs. Although formal coverage exists, indirect payments and services not covered by the system persist,
•under-resourced or poorly institutionalized health system is characterized by limited social protection and a high reliance on informal networks.
This categorization was intended as a contextual framework to support the interpretation of the findings, acknowledging that participants' experiences of FT are shaped by, though not explicitly articulated in terms of, these macro-structural factors.
2.4
Data extraction and meta-synthesis
Data were extracted independently by three authors (S.P., S.C, and L.B.), who agreed in advance on the information to be selected. The following data were extracted from each of the included reports: country of origin and healthcare system, journal title, study's aim(s) and design, recruitment setting, sampling strategy, data collection period, strategy and setting, data analysis, summary of findings, and sample characteristics.
In the context of this systematic review, we adopted a meta-synthesis approach to synthesize data, consistent to produce an interpretative integration and re-elaboration of qualitative findings from original studies. Meta-synthesis is a well-established methodology that transcends the mere aggregation of findings, instead offering a higher-order conceptualization through which novel interpretative insights can emerge [[27], [28], [29]]. Given the complexity and multifaceted nature of cancer-related FT, which intersects with structural, psychological, and relational domains, an interpretative approach was necessary to capture the depth and nuance of participants’ experiences. The phenomenon of FT in individuals with BC is not reducible to financial burdens alone, but involves identity negotiations, existential distress, and socio-economic inequalities. Thus, a meta-synthesis allowed us to move beyond listing barriers or coping mechanisms, and instead to identify deeper, latent constructs that shape how individuals experience, make sense of, and respond to FT.
To perform the meta-synthesis, both the quotes of individuals with BC (first order constructs) and the interpretation of the authors (second order constructs) of each original study were considered for extraction. The quotes reported under the headings “results” of each study were manually extracted and reported in an Excel table. During a meeting, S.P., B.B., M.S., A.C., and S.C. collaboratively coded the quotes of two original studies using line-by-line coding of the first and second order constructs to identify labels. Then, a third study was coded independently, and labels compared. The remaining studies were coded independently into existing or new labels. Subthemes and themes were inductively established by grouping labels and interpreting their meanings into a interpretative model. Disagreements were resolved with L.G. and S.D.L. The dataset is available in the repository.
Results
3
Results
The PRISMA flowchart (Fig. 1) reports retrieval and screening process. We retrieved 938 records from the selected databases. After removal of duplicates, 500 titles and abstracts were screened, of which 40 reports were sought in full text. Sixteen additional reports were identified through citation searching. Full-text reports were assessed for eligibility, of which 24 were excluded. The latter are referenced in appendix C (p 5) together with the reasons for their exclusion.
Table 1 summarizes data collected from the 32 studies included, which were conducted in Australia [30,31], Canada [32], China [33], Egypt [34], Ghana [35], India [[36], [37], [38]], Indonesia [39], Iran [40], Malaysia [41], Nigeria [42,43], Pakistan [44], the USA [[45], [46], [47], [48], [49], [50], [51], [52], [53], [54], [55], [56], [57], [58], [59], [60]], and Vietnam [61]. Twenty-four studies were qualitative [[30], [31], [32], [33],35,36,[39], [40], [41], [42], [43], [44], [45], [46],[49], [50], [51], [52], [53],55,[57], [58], [59], [60]], while seven had a mixed methods design [34,37,38,47,48,54,56], and one was an ethnography [61]. Five studies restricted eligibility to individuals with metastatic BC [31,39,53,58,60]. Sixteen studies used purposive sampling [32,36,37,39,40,42,43,[47], [48], [49],[51], [52], [53],55,57,59,60], six used convenience sampling [34,38,41,45,50,56], and five used mixed methods sampling designs [30,31,33,35,44,61]. Most studies used the individual semi-structured interview to collect data [30,31,[33], [34], [35], [36], [37],39,40,[42], [43], [44],[47], [48], [49], [50], [51],53,54,[56], [57], [58], [59], [60]]. A few other studies used focus group [32,38,41,45,46] or a mixed methods data collection modality [52,55,61].
Table 2 reports the data on 1080 participants included in this systematic review. Fifteen studies described the ethnicity of 766 respondents (75.8 %): between 52.5 % [47,48] and 94.0 % of participants [60] were non-Hispanic White/Caucasian patients, while between 4.3 % [56] and 43.0 % of participants [57,59] were non-Hispanic Black patients. Other ethnicities represented were Latina/Hispanic [45,49,54,59], Chinese [41], Malay [41], Indian [41], Asian [49,53], and Pacific Islander [54].
Fifteen studies described the employments status of 601 respondents (55.6 %): employed participants were between 33.3 % [34] and 100.0 % [35,43]; homemakers were between 4.8 % [43] and 83.3 % [36]. Thirteen studies described the insurance type of 704 respondents (65.2 %): between 3.1 % [49] and 82.5 % of participants [47,48] had a private insurance, while between 30.0 % [47,48] and 37.0 % of participants [31] had a public insurance. Another type of insurance was Medicaid/Medicare (USA), reported by between 8.8 % [54] and 76.2 % of participants [59].
Fifteen studies described the treatment modality of 621 respondents (57.5 %): between 63.6 % [58] and 100 % of participants [33,37,45,50,55] underwent surgery, from 45.0 % [57] to 100.0 % of participants [58] underwent chemotherapy, from 21.0 % [57] to 80.8 % [32] did hormone therapy, and from 8.3 % [35] to 82.5 % [47,48] underwent radiotherapy.
3.1
Appraisal consideration
Appendix D reports the results of the quality assessment (p 7); all the reports clearly stated their research aims. In almost all studies, the appropriateness of the study design, recruitment strategy, and data collection methods were positively evaluated by both researchers. However, the assessment of the relationship between researchers and participants was generally lacking, as most studies did not provide sufficient detail. Ethical considerations were generally well addressed, although some studies lacked details on informed consent. Data analyses were often rated as “Can't tell” due to insufficient descriptions of the analytical process. Nevertheless, most studies explicitly and clearly presented their findings, and over half reported adequate level of generalizability.
3.2
Meta-synthesis findings
The experience of individuals with BC concerning their cancer-related FT has been described through five main themes and related subthemes: (i) the existential cost of cancer (amplified inequalities, unaffordable medical expenses, hidden daily costs, erosion of assets, restructuring working life, shared impact on the household, work as anchor or obstacle), (ii) impact of insurance complexity (complex procedures, coverage affecting treatment decisions, distrust in insurance, maintain employment-related insurance), (iii) need for timely and accessible information (informed clinical decision-making, timing and modes of communication, cost estimation, employment and insurance opportunities to mitigate costs), (iv) seeking possible help (coping strategies, informal support networks, need for financial navigator, insufficient formal support, learning to ask), (v) negotiating daily life (dependency and role loss, abandonment of plans and aspirations). We interpreted the five themes in relation to each other by building an interpretative model, which is reported in Fig. 2.
3.3
The existential cost of cancer
BC diagnosis interfered in the lives of individuals across different socioeconomic backgrounds, amplifying pre-existing inequalities through sustained, unaffordable, and often perceived as unfair medical costs [54]. One of the main consequences was the erosion of personal assets and life savings [41,47] as the only possible source to cope with these expenses (and therefore to survive cancer), particularly when insurances did not guarantee the coverage of treatments. An individual with BC from the USA (private health system) said [56], “We had to use savings to cover all of the costs, ask our families for support, and constantly deal with various office billing departments” and a patient from Malaysia (national health system) reported, [41] “I am facing financial difficulties, I have to withdraw my savings to support my daily living.”
Nevertheless, inequalities stemmed not only from medical costs but also from the unexpected daily expenses, like transport and temporary housing for rural patients needing hospital access [52]. In this scenario, employment played a dual role. For some patients, it was the main anchor, the only source of income available to cover expenses, maintain insurance, or compensate for the lack of coverage [54]: “If you don't work during your treatment, you don't have resources …” (USA – private health system).
However, the amount of earnings from work may have dwindled due to employment changes after diagnosis, such as extended sickness absences or job loss [52]. Conversely, individuals' pre-diagnosis employment status was sometimes perceived as a barrier to accessing support after diagnosis, especially when individuals were at risk of job loss and had to manage work and cancer treatment [48]: “I think there are things in place for people who are very financially needy, but not really for someone who is like … I don't know what kind of classification I am, but who can still work …” (USA – private health system).
One thing was certain: patients restructured their lives (as workers but not only), with repercussions on others, especially on the closest family members. Caregivers adapted their work to take care of assistance and household chores [39]: “My husband used to work at the airport, but because of taking care of me, he quit his job and is now working nonpermanent jobs.” (Indonesia – poorly institutionalized system).
The existential costs of cancer trigger emotional turmoil, fear of financial ruin and job loss, guilt toward loved ones, and anger at the disease and society.
3.4
Impact of insurance complexity
Patients' experiences revealed a feeling of distrust in insurance, mainly due to the lack of transparency and dishonesty [50] that leads these organizations to have only one goal: to put pressure on sick patients [46] without caring about their care or privacy [51]. An individual with BC from the USA (private health system) said [50]: “But when I was going through this I had to go on disability. My disability insurance tried to mess with how much they were giving me. Yes, it was thousands of dollars.”
Disbelief was exacerbated by delays between prompt treatment and slow insurance processes [51]. Gaps in coverage, co-payments, and reimbursement left patients unprepared, as they lacked both information and financial resources [33,41,46], not to mention those who did not have insurance coverage, like a Malaysian patient (national health system) who stated [41], “Mastectomy and prosthesis comes to US$ 241, which I am quite mindful. If the prosthesis is cheaper, then I will pay for it. But since it is over US$ 241, I am willing to forego it because of costs.”
Continuing to work was often seen as the only way to retain insurance coverage, though it was not guaranteed, as it largely depended on the type of employment contract [32].
Challenging relationships and widespread distrust towards insurers led patients to make treatment choices based on coverage and financial constraints [46], reinforcing feelings of powerlessness and injustice.
3.5
Need for timely and accessible information
Patients felt overwhelmed and unprepared to face cancer's financial impact, reporting poor access to clear, timely information on direct and indirect costs [54]. An individual with BC from the USA (private health system) reported [49]: “I think that's the hardest thing for me was the stress and the burden of the financial hardship that you go through. You feel like it's never going to end.” Another patient from India (poorly institutionalized system) said [38]: “There is no information on the entire treatment; it's like you go for surgery, then they give you the estimate, then your next step is chemotherapy, then they give an estimate for chemotherapy, then similar for radiation.”
Unmet information needs caused psychological distress, including the lack of guidance regarding the consequences of work changes and the role of income in managing care and maintaining insurance [50].
Individuals with BC from the USA (private health system) acknowledge the need for timely information provision, although the optimal timing remains unclear, whether it should be in conjunction with the diagnosis (“Right from the very beginning, absolutely, as soon as you're diagnosed and you go in there”), [49] or not (“I think cancer patients get bombarded with information in the beginning”), [54] or after diagnosis but before starting treatment [57].
Patients appropriately informed on the cost-related aspects of disease were competent to make informed clinical decisions and to deal with the disease with higher self-efficacy, as reported by a Chinese patient (national health system) [33]: “After illness, I read the literature by myself, then discussed it with the doctor for the optimal treatment method, and adhered to it. I knew how to treat it and understood my own condition.” To improve their situation, individuals with BC who lacked information sought available support.
3.6
Seeking possible help
Despite the challenges, BC survivors engaged in various coping strategies to manage FT. One of the first resources they activated was maintaining a positive attitude, which is perceived as essential to navigating the financial uncertainty caused by the illness, as reported by individuals with BC from different countries: “On some days I worry … God, what am I supposed to be doing? But at the end of the day I'm optimistic” [55] (USA - private health system) and “There is not much economic pressure. I am quite confident. My illness will definitely get better in the future.” [33] (China - national health system)
Coping strategies also included a careful rebalancing of family needs according to financial priorities and prognosis [33]: “If he (son) wants something that is not related to learning, I will consider whether to buy it, unlike before when he could buy whatever he wanted … As for myself, now I basically don't buy luxury goods.” (China – national health system).
Not least, survivors must sometimes face the scenario of an unfavourable prognosis and the potential financial impact that a premature death could impose on vulnerable family members. In this context, a reorganization of family dynamics and a redefinition of roles often emerge, shaped by the need to face both financial and clinical uncertainties because, “It's like, okay, so if I have these two years left, I need to pay whatever I can to live. But on the flip side, I don't want to go on any vacations, I don't want to buy anything extra. I want to pay down as much debt as we possibly can. Because if things go sideways, I've got to leave my family in a good situation. So, it's a real razor wire that you're walking, for cancer treatment, I think.” [52] (USA – private health system).
A key aspect of coping involved learning to seek help. Survivors may turn to family, friends, and colleagues, overcoming the discomfort that admitting vulnerability can bring and building informal networks of resilience that offer both emotional and financial support [37,50], as reported by individuals with BC from different countries: “One of my friends sent a message to the classmates group, one friend said I will pay your bill, I managed with the money sent by friends.” [37] (India - poorly institutionalized system) and “We had to ask for help a lot. They did a fundraiser for me. That helped us get through a bit. Yeah, people brought us groceries and food. Having that community around to help is what enabled us to take care of those other basic needs.” [49] (USA - private health system)
Requesting assistance is also directed toward formal institutions, which requires learning to interact with administrative systems and unfamiliar procedures, often at a time when energy and attention should be focused on healing [58]: “I need help with my electricity bill. It was kind of like, well, we need proof. They said, we're sure you're telling the truth, but we need proof from your doctor that you have cancer. So, I had to leave there, go all the way down to the hospital … wait for it … and then come all the way back and get assistance. And, if you don't get it by a certain day, you miss it that month.” (USA – private health system).
Many survivors advocate for earlier and more structured communication about care costs, and describe support from dedicated professionals, such as case managers or financial navigators [48,58], as valuable in navigating resources, completing forms, and managing bureaucratic processes [45]: “I brought up the cost with every doctor I met and every time I had an appointment. My oncologist finally told me not to mention it again as she did not want my financial situation to affect her medical decisions!” (USA – private health system).
Resilience is further strengthened through broader support networks, which may include not only personal relationships but also community services and the work environment [58]: “I received things that I didn't even ask about … [social worker] signed me up for things that I wasn't even aware of. You know, so it was great to open the mail, and get a gift card for [groceries].” (USA – private health system).
The workplace, in particular, can serve as a crucial source of support in mitigating FT, offering flexibility, understanding, and protections that may significantly help BC survivors manage the economic challenges associated with their illness [33]: “No change in position, no change in salary. The workload is relatively small now; I only need to manage my subordinates, and then I can get off work when the time comes. In the past, I had to work overtime for a long time.” (China – national health system). Even though the stress may be unbearable in certain situation [35], “I get stressed up and stress is not good so I had to slow down for a while. I finally withdrew from work totally.” (Ghana – poorly institutionalized system).
3.7
Negotiating daily life
Rising costs and limited resources forced lifestyle changes and gradual loss of access to essential and non-essential goods because “I am trying to make sure that I have the money that I need to go to the doctor.” [58] (USA – private health system) Negotiation meant suffering as “I had to miss life, things with my kids and events.” [54] (USA – private health system) Deprivation did not only concern the present but also the abandonment of plans for the personal and family future. Individuals with BC from the USA and China reported: “I owe so much in medical bills that I have decided not to purchase a home” [52] (USA – private health system) and “I worry about my daughter's future education and the future expenses of our family.” [33] (China – national health system) Debts and difficulties in recovering lost money create a strong economic dependence on family members and the consequent loss of role. Accessing informal financial support may be experienced with discomfort, including a perceived loss of economic independence and decision-making role within the family.
Results
The PRISMA flowchart (Fig. 1) reports retrieval and screening process. We retrieved 938 records from the selected databases. After removal of duplicates, 500 titles and abstracts were screened, of which 40 reports were sought in full text. Sixteen additional reports were identified through citation searching. Full-text reports were assessed for eligibility, of which 24 were excluded. The latter are referenced in appendix C (p 5) together with the reasons for their exclusion.
Table 1 summarizes data collected from the 32 studies included, which were conducted in Australia [30,31], Canada [32], China [33], Egypt [34], Ghana [35], India [[36], [37], [38]], Indonesia [39], Iran [40], Malaysia [41], Nigeria [42,43], Pakistan [44], the USA [[45], [46], [47], [48], [49], [50], [51], [52], [53], [54], [55], [56], [57], [58], [59], [60]], and Vietnam [61]. Twenty-four studies were qualitative [[30], [31], [32], [33],35,36,[39], [40], [41], [42], [43], [44], [45], [46],[49], [50], [51], [52], [53],55,[57], [58], [59], [60]], while seven had a mixed methods design [34,37,38,47,48,54,56], and one was an ethnography [61]. Five studies restricted eligibility to individuals with metastatic BC [31,39,53,58,60]. Sixteen studies used purposive sampling [32,36,37,39,40,42,43,[47], [48], [49],[51], [52], [53],55,57,59,60], six used convenience sampling [34,38,41,45,50,56], and five used mixed methods sampling designs [30,31,33,35,44,61]. Most studies used the individual semi-structured interview to collect data [30,31,[33], [34], [35], [36], [37],39,40,[42], [43], [44],[47], [48], [49], [50], [51],53,54,[56], [57], [58], [59], [60]]. A few other studies used focus group [32,38,41,45,46] or a mixed methods data collection modality [52,55,61].
Table 2 reports the data on 1080 participants included in this systematic review. Fifteen studies described the ethnicity of 766 respondents (75.8 %): between 52.5 % [47,48] and 94.0 % of participants [60] were non-Hispanic White/Caucasian patients, while between 4.3 % [56] and 43.0 % of participants [57,59] were non-Hispanic Black patients. Other ethnicities represented were Latina/Hispanic [45,49,54,59], Chinese [41], Malay [41], Indian [41], Asian [49,53], and Pacific Islander [54].
Fifteen studies described the employments status of 601 respondents (55.6 %): employed participants were between 33.3 % [34] and 100.0 % [35,43]; homemakers were between 4.8 % [43] and 83.3 % [36]. Thirteen studies described the insurance type of 704 respondents (65.2 %): between 3.1 % [49] and 82.5 % of participants [47,48] had a private insurance, while between 30.0 % [47,48] and 37.0 % of participants [31] had a public insurance. Another type of insurance was Medicaid/Medicare (USA), reported by between 8.8 % [54] and 76.2 % of participants [59].
Fifteen studies described the treatment modality of 621 respondents (57.5 %): between 63.6 % [58] and 100 % of participants [33,37,45,50,55] underwent surgery, from 45.0 % [57] to 100.0 % of participants [58] underwent chemotherapy, from 21.0 % [57] to 80.8 % [32] did hormone therapy, and from 8.3 % [35] to 82.5 % [47,48] underwent radiotherapy.
3.1
Appraisal consideration
Appendix D reports the results of the quality assessment (p 7); all the reports clearly stated their research aims. In almost all studies, the appropriateness of the study design, recruitment strategy, and data collection methods were positively evaluated by both researchers. However, the assessment of the relationship between researchers and participants was generally lacking, as most studies did not provide sufficient detail. Ethical considerations were generally well addressed, although some studies lacked details on informed consent. Data analyses were often rated as “Can't tell” due to insufficient descriptions of the analytical process. Nevertheless, most studies explicitly and clearly presented their findings, and over half reported adequate level of generalizability.
3.2
Meta-synthesis findings
The experience of individuals with BC concerning their cancer-related FT has been described through five main themes and related subthemes: (i) the existential cost of cancer (amplified inequalities, unaffordable medical expenses, hidden daily costs, erosion of assets, restructuring working life, shared impact on the household, work as anchor or obstacle), (ii) impact of insurance complexity (complex procedures, coverage affecting treatment decisions, distrust in insurance, maintain employment-related insurance), (iii) need for timely and accessible information (informed clinical decision-making, timing and modes of communication, cost estimation, employment and insurance opportunities to mitigate costs), (iv) seeking possible help (coping strategies, informal support networks, need for financial navigator, insufficient formal support, learning to ask), (v) negotiating daily life (dependency and role loss, abandonment of plans and aspirations). We interpreted the five themes in relation to each other by building an interpretative model, which is reported in Fig. 2.
3.3
The existential cost of cancer
BC diagnosis interfered in the lives of individuals across different socioeconomic backgrounds, amplifying pre-existing inequalities through sustained, unaffordable, and often perceived as unfair medical costs [54]. One of the main consequences was the erosion of personal assets and life savings [41,47] as the only possible source to cope with these expenses (and therefore to survive cancer), particularly when insurances did not guarantee the coverage of treatments. An individual with BC from the USA (private health system) said [56], “We had to use savings to cover all of the costs, ask our families for support, and constantly deal with various office billing departments” and a patient from Malaysia (national health system) reported, [41] “I am facing financial difficulties, I have to withdraw my savings to support my daily living.”
Nevertheless, inequalities stemmed not only from medical costs but also from the unexpected daily expenses, like transport and temporary housing for rural patients needing hospital access [52]. In this scenario, employment played a dual role. For some patients, it was the main anchor, the only source of income available to cover expenses, maintain insurance, or compensate for the lack of coverage [54]: “If you don't work during your treatment, you don't have resources …” (USA – private health system).
However, the amount of earnings from work may have dwindled due to employment changes after diagnosis, such as extended sickness absences or job loss [52]. Conversely, individuals' pre-diagnosis employment status was sometimes perceived as a barrier to accessing support after diagnosis, especially when individuals were at risk of job loss and had to manage work and cancer treatment [48]: “I think there are things in place for people who are very financially needy, but not really for someone who is like … I don't know what kind of classification I am, but who can still work …” (USA – private health system).
One thing was certain: patients restructured their lives (as workers but not only), with repercussions on others, especially on the closest family members. Caregivers adapted their work to take care of assistance and household chores [39]: “My husband used to work at the airport, but because of taking care of me, he quit his job and is now working nonpermanent jobs.” (Indonesia – poorly institutionalized system).
The existential costs of cancer trigger emotional turmoil, fear of financial ruin and job loss, guilt toward loved ones, and anger at the disease and society.
3.4
Impact of insurance complexity
Patients' experiences revealed a feeling of distrust in insurance, mainly due to the lack of transparency and dishonesty [50] that leads these organizations to have only one goal: to put pressure on sick patients [46] without caring about their care or privacy [51]. An individual with BC from the USA (private health system) said [50]: “But when I was going through this I had to go on disability. My disability insurance tried to mess with how much they were giving me. Yes, it was thousands of dollars.”
Disbelief was exacerbated by delays between prompt treatment and slow insurance processes [51]. Gaps in coverage, co-payments, and reimbursement left patients unprepared, as they lacked both information and financial resources [33,41,46], not to mention those who did not have insurance coverage, like a Malaysian patient (national health system) who stated [41], “Mastectomy and prosthesis comes to US$ 241, which I am quite mindful. If the prosthesis is cheaper, then I will pay for it. But since it is over US$ 241, I am willing to forego it because of costs.”
Continuing to work was often seen as the only way to retain insurance coverage, though it was not guaranteed, as it largely depended on the type of employment contract [32].
Challenging relationships and widespread distrust towards insurers led patients to make treatment choices based on coverage and financial constraints [46], reinforcing feelings of powerlessness and injustice.
3.5
Need for timely and accessible information
Patients felt overwhelmed and unprepared to face cancer's financial impact, reporting poor access to clear, timely information on direct and indirect costs [54]. An individual with BC from the USA (private health system) reported [49]: “I think that's the hardest thing for me was the stress and the burden of the financial hardship that you go through. You feel like it's never going to end.” Another patient from India (poorly institutionalized system) said [38]: “There is no information on the entire treatment; it's like you go for surgery, then they give you the estimate, then your next step is chemotherapy, then they give an estimate for chemotherapy, then similar for radiation.”
Unmet information needs caused psychological distress, including the lack of guidance regarding the consequences of work changes and the role of income in managing care and maintaining insurance [50].
Individuals with BC from the USA (private health system) acknowledge the need for timely information provision, although the optimal timing remains unclear, whether it should be in conjunction with the diagnosis (“Right from the very beginning, absolutely, as soon as you're diagnosed and you go in there”), [49] or not (“I think cancer patients get bombarded with information in the beginning”), [54] or after diagnosis but before starting treatment [57].
Patients appropriately informed on the cost-related aspects of disease were competent to make informed clinical decisions and to deal with the disease with higher self-efficacy, as reported by a Chinese patient (national health system) [33]: “After illness, I read the literature by myself, then discussed it with the doctor for the optimal treatment method, and adhered to it. I knew how to treat it and understood my own condition.” To improve their situation, individuals with BC who lacked information sought available support.
3.6
Seeking possible help
Despite the challenges, BC survivors engaged in various coping strategies to manage FT. One of the first resources they activated was maintaining a positive attitude, which is perceived as essential to navigating the financial uncertainty caused by the illness, as reported by individuals with BC from different countries: “On some days I worry … God, what am I supposed to be doing? But at the end of the day I'm optimistic” [55] (USA - private health system) and “There is not much economic pressure. I am quite confident. My illness will definitely get better in the future.” [33] (China - national health system)
Coping strategies also included a careful rebalancing of family needs according to financial priorities and prognosis [33]: “If he (son) wants something that is not related to learning, I will consider whether to buy it, unlike before when he could buy whatever he wanted … As for myself, now I basically don't buy luxury goods.” (China – national health system).
Not least, survivors must sometimes face the scenario of an unfavourable prognosis and the potential financial impact that a premature death could impose on vulnerable family members. In this context, a reorganization of family dynamics and a redefinition of roles often emerge, shaped by the need to face both financial and clinical uncertainties because, “It's like, okay, so if I have these two years left, I need to pay whatever I can to live. But on the flip side, I don't want to go on any vacations, I don't want to buy anything extra. I want to pay down as much debt as we possibly can. Because if things go sideways, I've got to leave my family in a good situation. So, it's a real razor wire that you're walking, for cancer treatment, I think.” [52] (USA – private health system).
A key aspect of coping involved learning to seek help. Survivors may turn to family, friends, and colleagues, overcoming the discomfort that admitting vulnerability can bring and building informal networks of resilience that offer both emotional and financial support [37,50], as reported by individuals with BC from different countries: “One of my friends sent a message to the classmates group, one friend said I will pay your bill, I managed with the money sent by friends.” [37] (India - poorly institutionalized system) and “We had to ask for help a lot. They did a fundraiser for me. That helped us get through a bit. Yeah, people brought us groceries and food. Having that community around to help is what enabled us to take care of those other basic needs.” [49] (USA - private health system)
Requesting assistance is also directed toward formal institutions, which requires learning to interact with administrative systems and unfamiliar procedures, often at a time when energy and attention should be focused on healing [58]: “I need help with my electricity bill. It was kind of like, well, we need proof. They said, we're sure you're telling the truth, but we need proof from your doctor that you have cancer. So, I had to leave there, go all the way down to the hospital … wait for it … and then come all the way back and get assistance. And, if you don't get it by a certain day, you miss it that month.” (USA – private health system).
Many survivors advocate for earlier and more structured communication about care costs, and describe support from dedicated professionals, such as case managers or financial navigators [48,58], as valuable in navigating resources, completing forms, and managing bureaucratic processes [45]: “I brought up the cost with every doctor I met and every time I had an appointment. My oncologist finally told me not to mention it again as she did not want my financial situation to affect her medical decisions!” (USA – private health system).
Resilience is further strengthened through broader support networks, which may include not only personal relationships but also community services and the work environment [58]: “I received things that I didn't even ask about … [social worker] signed me up for things that I wasn't even aware of. You know, so it was great to open the mail, and get a gift card for [groceries].” (USA – private health system).
The workplace, in particular, can serve as a crucial source of support in mitigating FT, offering flexibility, understanding, and protections that may significantly help BC survivors manage the economic challenges associated with their illness [33]: “No change in position, no change in salary. The workload is relatively small now; I only need to manage my subordinates, and then I can get off work when the time comes. In the past, I had to work overtime for a long time.” (China – national health system). Even though the stress may be unbearable in certain situation [35], “I get stressed up and stress is not good so I had to slow down for a while. I finally withdrew from work totally.” (Ghana – poorly institutionalized system).
3.7
Negotiating daily life
Rising costs and limited resources forced lifestyle changes and gradual loss of access to essential and non-essential goods because “I am trying to make sure that I have the money that I need to go to the doctor.” [58] (USA – private health system) Negotiation meant suffering as “I had to miss life, things with my kids and events.” [54] (USA – private health system) Deprivation did not only concern the present but also the abandonment of plans for the personal and family future. Individuals with BC from the USA and China reported: “I owe so much in medical bills that I have decided not to purchase a home” [52] (USA – private health system) and “I worry about my daughter's future education and the future expenses of our family.” [33] (China – national health system) Debts and difficulties in recovering lost money create a strong economic dependence on family members and the consequent loss of role. Accessing informal financial support may be experienced with discomfort, including a perceived loss of economic independence and decision-making role within the family.
Discussion
4
Discussion
This study interprets the lived experience of cancer-related FT among individuals with BC. Most of the included studies were conducted in North America, with additional research originating in South, East, and West Asia, Oceania, and Northwest Africa. Currently, there are no qualitative studies from European countries addressing cancer-related FT in individuals with BC, despite evidence of FT in high-income nations, including nearly all European countries [19]. The findings of this review underscore the transversal nature of key dimensions of cancer-related FT in individuals with BC across healthcare systems, showing that, despite structural differences, socioeconomic and cultural conditions consistently shape patients’ experiences of financial burden.
Corroborated by a recent scoping review [62], BC survivors who lived in rural areas and with lower socioeconomic status faced greater challenges in affording medical costs, including surgery or chemotherapy. An individual with BC in the USA (private health system) was forced to sell her car [54], while a Nigerian patient (poorly institutionalized system) had to sell her goat to cover medical expenses [42].
Additionally, hidden non-medical costs, such as those incurred when traveling to the most economically accessible hospital, posed a real burden on patients and families. Due to prolonged wait times within the Canadian healthcare system, a patient was compelled to seek radiation therapy treatment abroad [32]. Therefore, a patient's socioeconomic status at the time of diagnosis, as well as any changes resulting from the cancer, such as job loss, can significantly shape their experience of FT.
As medical and non-medical expenses increased, employment was often perceived as a bulwark against FT. While employment is typically assumed to ensure adequate income for daily living, savings, and insurance coverage, cancer-related challenges, such as job loss or reduced work capacity, can severely undermine an individual's financial stability. In these circumstances, individuals with BC frequently relied on personal savings to cover treatment costs or turned to alternative sources of support. This reliance on personal financial resources is particularly common in healthcare systems where patients face substantial out-of-pocket expenses due to limited welfare support [49,56].
This scenario was also reported by several Egyptian BC survivors [63] and by caregivers of Indian cancer survivors [64]. Findings from this meta-synthesis reveal that using savings to cover treatment costs was necessary but heartbreaking, as it disrupted future plans [54]. Conversely, being employed at the time of diagnosis may be disadvantageous in accessing formal support after diagnosis. In certain circumstances, individuals with BC who were already unemployed or retired at the time of diagnosis appeared to experience lower levels of FT compared to those who became unemployed because of their illness [62].
Insurance coverage played a pivotal role in shaping the lived experience of cancer-related FT. Findings from this meta-synthesis support the notion that insurance policies often influence patients' treatment decisions, leading them to consider their financial situation and coverage limitations when selecting care options. While full coverage from insurance companies appeared to protect against FT [7], several individuals only had partial coverage and thus needed co-financing, and others had no insurance coverage at all. Insurance coverage reflects the patient's socioeconomic status, exacerbating inequality in cancer care costs. Half of the included studies were mainly conducted in the USA, a country where two-thirds of the health system is based on voluntary insurance, while the government-funded support programs are for the most vulnerable subjects (ie, the elderly) [65]. Therefore, insurance coverage depends on a patient's pre-diagnosis socioeconomic status. Overall, having insurance and clear information helped patients make informed clinical decisions. However, even those who had insurance coverage reported distrust, as they felt cheated, or because the procedures were complex at a time when promptness is required [60].
To address the unexpected costs of cancer, individuals with BC requested clear cost estimates and guidance on mitigating expenses through employment and insurance. Furthermore, patient preference regarding the timing of receiving cost-related information varied, emphasizing that a standardized approach is inadequate [66]. To face the cost of cancer, individuals with BC requested and received support from family members, the workplace, social network, and the community, sometimes even through fund raising [33]. Nonetheless, they felt uncomfortable asking for help, showing their vulnerability, and interfering with other people's lives. As a matter of fact, family members of cancer survivors suffered the most the economic repercussions of cancer treatment [67]. This meta-synthesis highlighted that sometimes the informal caregiver was forced to change his/her work condition in order to assist with domestic responsibilities [39]. This life rebuilding had an impact on household incomes. Therefore, an emerging need was to receive specific support beyond the family, specifically from a manager of the economic aspects of cancer care.
FT affected both patients and their families, forcing lifestyle changes to align costs with limited income and resources. Abandoning future plans and reducing spending on essential and non-essential goods were common changes reported [52], consistent with findings from a systematic review of Indian cancer survivors [68]. Individuals with BC faced the painful choice of treatment based on affordability, leading to emotional distress, a diminished sense of autonomy in decision-making, distrust in institutions, and feelings of guilt and of being a burden.
To summarize, this meta-synthesis is the first systematic review of qualitative studies examining the broad experience of cancer-related FT from the perspective of individuals with BC across all phases of the treatment pathway. Unlike previous reviews, which focused solely on coping strategies [20], this study included global research involving participants at varying disease stages, survivorship phases, and with different ethnic background, with the aim of capturing diverse and comprehensive experiences of FT. By not restricting inclusion based on healthcare systems, the review also considered different social contexts. Although the extensive number of studies may have limited the ability to capture certain nuanced meanings, the complete database remains open for consultation.
The review reveals a key gap: a lack of original qualitative research in Europe. This is crucial, as the experience of cancer-related FT is shaped not only by treatment costs but also by country-dependent healthcare system and cultural nuances. Europe's diverse healthcare systems may shape different FT perceptions, warranting further study.
An additional insight from this meta-synthesis is the multifaceted role of employment. Work can either help or hinder individuals with BC in managing FT, affecting both pre-diagnosis socioeconomic status and insurance coverage. Insurance, in turn, influences the existential cost of illness and is tightly linked to each country's healthcare systems.
Although this meta-synthesis focused on shared experiential dimensions of cancer-related FT, studies were conducted within diverse healthcare systems. As participants may not explicitly articulate macro-structural influences on their care trajectories, contextual effects were inferred. Therefore, healthcare systems were grouped according to dominant financing and coverage mechanisms. In predominantly private health systems, participants’ narratives emphasized that FT was shaped by insurance complexity, coverage gaps, and employment-linked benefits [46,50,51,54,56]. In national health systems, it was more commonly associated with indirect and non-covered costs, income loss, and administrative burdens [[30], [31], [32],41]. In under-resourced or poorly institutionalized contexts, FT was embedded in broader social insecurity and often experienced as an existential threat affecting both individuals and their families [35,[37], [38], [39]]. Although not intended as a systematic cross-country comparison, this framing illustrates how structural conditions influence the lived experience of FT from a patient-centred perspective. Therefore, the subthemes identified should be adapted based on each country. This context dependency limits the generalizability of the findings, and results should be interpreted with appropriate caution.
To conclude, this meta-synthesis enhances our understanding of the experience of cancer-related FT among individuals with BC, particularly its impact on daily life. The interpretative model can guide healthcare and social professionals in the screening of FT by mapping the problems encountered to promote communication that includes the economic implications of cancer diagnosis. These steps may positively affect clinical decision-making and patient's adherence to treatment as well as mitigate the psychological consequences associated with FT [69].
Discussion
This study interprets the lived experience of cancer-related FT among individuals with BC. Most of the included studies were conducted in North America, with additional research originating in South, East, and West Asia, Oceania, and Northwest Africa. Currently, there are no qualitative studies from European countries addressing cancer-related FT in individuals with BC, despite evidence of FT in high-income nations, including nearly all European countries [19]. The findings of this review underscore the transversal nature of key dimensions of cancer-related FT in individuals with BC across healthcare systems, showing that, despite structural differences, socioeconomic and cultural conditions consistently shape patients’ experiences of financial burden.
Corroborated by a recent scoping review [62], BC survivors who lived in rural areas and with lower socioeconomic status faced greater challenges in affording medical costs, including surgery or chemotherapy. An individual with BC in the USA (private health system) was forced to sell her car [54], while a Nigerian patient (poorly institutionalized system) had to sell her goat to cover medical expenses [42].
Additionally, hidden non-medical costs, such as those incurred when traveling to the most economically accessible hospital, posed a real burden on patients and families. Due to prolonged wait times within the Canadian healthcare system, a patient was compelled to seek radiation therapy treatment abroad [32]. Therefore, a patient's socioeconomic status at the time of diagnosis, as well as any changes resulting from the cancer, such as job loss, can significantly shape their experience of FT.
As medical and non-medical expenses increased, employment was often perceived as a bulwark against FT. While employment is typically assumed to ensure adequate income for daily living, savings, and insurance coverage, cancer-related challenges, such as job loss or reduced work capacity, can severely undermine an individual's financial stability. In these circumstances, individuals with BC frequently relied on personal savings to cover treatment costs or turned to alternative sources of support. This reliance on personal financial resources is particularly common in healthcare systems where patients face substantial out-of-pocket expenses due to limited welfare support [49,56].
This scenario was also reported by several Egyptian BC survivors [63] and by caregivers of Indian cancer survivors [64]. Findings from this meta-synthesis reveal that using savings to cover treatment costs was necessary but heartbreaking, as it disrupted future plans [54]. Conversely, being employed at the time of diagnosis may be disadvantageous in accessing formal support after diagnosis. In certain circumstances, individuals with BC who were already unemployed or retired at the time of diagnosis appeared to experience lower levels of FT compared to those who became unemployed because of their illness [62].
Insurance coverage played a pivotal role in shaping the lived experience of cancer-related FT. Findings from this meta-synthesis support the notion that insurance policies often influence patients' treatment decisions, leading them to consider their financial situation and coverage limitations when selecting care options. While full coverage from insurance companies appeared to protect against FT [7], several individuals only had partial coverage and thus needed co-financing, and others had no insurance coverage at all. Insurance coverage reflects the patient's socioeconomic status, exacerbating inequality in cancer care costs. Half of the included studies were mainly conducted in the USA, a country where two-thirds of the health system is based on voluntary insurance, while the government-funded support programs are for the most vulnerable subjects (ie, the elderly) [65]. Therefore, insurance coverage depends on a patient's pre-diagnosis socioeconomic status. Overall, having insurance and clear information helped patients make informed clinical decisions. However, even those who had insurance coverage reported distrust, as they felt cheated, or because the procedures were complex at a time when promptness is required [60].
To address the unexpected costs of cancer, individuals with BC requested clear cost estimates and guidance on mitigating expenses through employment and insurance. Furthermore, patient preference regarding the timing of receiving cost-related information varied, emphasizing that a standardized approach is inadequate [66]. To face the cost of cancer, individuals with BC requested and received support from family members, the workplace, social network, and the community, sometimes even through fund raising [33]. Nonetheless, they felt uncomfortable asking for help, showing their vulnerability, and interfering with other people's lives. As a matter of fact, family members of cancer survivors suffered the most the economic repercussions of cancer treatment [67]. This meta-synthesis highlighted that sometimes the informal caregiver was forced to change his/her work condition in order to assist with domestic responsibilities [39]. This life rebuilding had an impact on household incomes. Therefore, an emerging need was to receive specific support beyond the family, specifically from a manager of the economic aspects of cancer care.
FT affected both patients and their families, forcing lifestyle changes to align costs with limited income and resources. Abandoning future plans and reducing spending on essential and non-essential goods were common changes reported [52], consistent with findings from a systematic review of Indian cancer survivors [68]. Individuals with BC faced the painful choice of treatment based on affordability, leading to emotional distress, a diminished sense of autonomy in decision-making, distrust in institutions, and feelings of guilt and of being a burden.
To summarize, this meta-synthesis is the first systematic review of qualitative studies examining the broad experience of cancer-related FT from the perspective of individuals with BC across all phases of the treatment pathway. Unlike previous reviews, which focused solely on coping strategies [20], this study included global research involving participants at varying disease stages, survivorship phases, and with different ethnic background, with the aim of capturing diverse and comprehensive experiences of FT. By not restricting inclusion based on healthcare systems, the review also considered different social contexts. Although the extensive number of studies may have limited the ability to capture certain nuanced meanings, the complete database remains open for consultation.
The review reveals a key gap: a lack of original qualitative research in Europe. This is crucial, as the experience of cancer-related FT is shaped not only by treatment costs but also by country-dependent healthcare system and cultural nuances. Europe's diverse healthcare systems may shape different FT perceptions, warranting further study.
An additional insight from this meta-synthesis is the multifaceted role of employment. Work can either help or hinder individuals with BC in managing FT, affecting both pre-diagnosis socioeconomic status and insurance coverage. Insurance, in turn, influences the existential cost of illness and is tightly linked to each country's healthcare systems.
Although this meta-synthesis focused on shared experiential dimensions of cancer-related FT, studies were conducted within diverse healthcare systems. As participants may not explicitly articulate macro-structural influences on their care trajectories, contextual effects were inferred. Therefore, healthcare systems were grouped according to dominant financing and coverage mechanisms. In predominantly private health systems, participants’ narratives emphasized that FT was shaped by insurance complexity, coverage gaps, and employment-linked benefits [46,50,51,54,56]. In national health systems, it was more commonly associated with indirect and non-covered costs, income loss, and administrative burdens [[30], [31], [32],41]. In under-resourced or poorly institutionalized contexts, FT was embedded in broader social insecurity and often experienced as an existential threat affecting both individuals and their families [35,[37], [38], [39]]. Although not intended as a systematic cross-country comparison, this framing illustrates how structural conditions influence the lived experience of FT from a patient-centred perspective. Therefore, the subthemes identified should be adapted based on each country. This context dependency limits the generalizability of the findings, and results should be interpreted with appropriate caution.
To conclude, this meta-synthesis enhances our understanding of the experience of cancer-related FT among individuals with BC, particularly its impact on daily life. The interpretative model can guide healthcare and social professionals in the screening of FT by mapping the problems encountered to promote communication that includes the economic implications of cancer diagnosis. These steps may positively affect clinical decision-making and patient's adherence to treatment as well as mitigate the psychological consequences associated with FT [69].
CRediT authorship contribution statement
CRediT authorship contribution statement
Sara Paltrinieri: Writing – review & editing, Writing – original draft, Visualization, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Margherita Schiavi: Writing – review & editing, Writing – original draft, Visualization, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Barbara Bressi: Writing – review & editing, Investigation, Formal analysis, Data curation. Angela Contri: Writing – review & editing, Investigation, Formal analysis. Martina Torreggiani: Writing – review & editing, Investigation, Data curation. Laura Bernardi: Writing – review & editing, Investigation, Data curation. Elisa Mazzini: Writing – review & editing, Investigation, Conceptualization. Maria Chiara Bassi: Writing – review & editing, Methodology, Investigation, Conceptualization. Silvia di Leo: Writing – review & editing, Methodology, Investigation, Conceptualization. Luca Ghirotto: Writing – review & editing, Methodology, Investigation, Conceptualization. Stefania Costi: Writing – review & editing, Writing – original draft, Supervision, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization.
Sara Paltrinieri: Writing – review & editing, Writing – original draft, Visualization, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Margherita Schiavi: Writing – review & editing, Writing – original draft, Visualization, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Barbara Bressi: Writing – review & editing, Investigation, Formal analysis, Data curation. Angela Contri: Writing – review & editing, Investigation, Formal analysis. Martina Torreggiani: Writing – review & editing, Investigation, Data curation. Laura Bernardi: Writing – review & editing, Investigation, Data curation. Elisa Mazzini: Writing – review & editing, Investigation, Conceptualization. Maria Chiara Bassi: Writing – review & editing, Methodology, Investigation, Conceptualization. Silvia di Leo: Writing – review & editing, Methodology, Investigation, Conceptualization. Luca Ghirotto: Writing – review & editing, Methodology, Investigation, Conceptualization. Stefania Costi: Writing – review & editing, Writing – original draft, Supervision, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization.
Data sharing statement
Data sharing statement
Dataset reporting first order and second order constructs extracted from each original qualitative study included in this meta-synthesis are available for consultation in an online repository (https://doi.org/10.5281/zenodo.16561567).
Dataset reporting first order and second order constructs extracted from each original qualitative study included in this meta-synthesis are available for consultation in an online repository (https://doi.org/10.5281/zenodo.16561567).
Funding
Funding
This study was partially supported by the Italian Ministry of Health-Ricerca Corrente Annual Program 2027.
This study was partially supported by the Italian Ministry of Health-Ricerca Corrente Annual Program 2027.
Declaration of competing interest
Declaration of competing interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
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🏷️ 같은 키워드 · 무료전문 — 이 논문 MeSH/keyword 기반
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