Understanding the Financial Needs Following Diagnosis of Breast Cancer in a Setting with Universal Health Coverage

Abstract

Background

A diagnosis of cancer negatively impacts the financial wellbeing of affected individuals as well as their households. We aimed to gain an in‐depth understanding of the financial needs following diagnosis of breast cancer in a middle‐income setting with universal health coverage.

Materials and Methods

Twelve focus group discussions (n = 64) were conducted with women with breast cancer from two public and three private hospitals. This study specifically focused on (a) health costs, (b) nonhealth costs, (c) employment and earnings, and (d) financial assistance. Thematic analysis was used.

Results

Financial needs related to cancer treatment and health care varied according to the participant's socioeconomic background and type of medical insurance. Although having medical insurance alleviated cancer treatment‐related financial difficulties, limited policy coverage for cancer care and suboptimal reimbursement policies were common complaints. Nonhealth expenditures were also cited as an important source of financial distress; patients from low‐income households reported transport and parking costs as troublesome, with some struggling to afford basic necessities, whereas participants from higher‐income households mentioned hired help, special food and/or supplements and appliances as expensive needs following cancer. Needy patients had a hard time navigating through the complex system to obtain financial support. Irrespective of socioeconomic status, reductions in household income due to loss of employment and/or earnings were a major source of economic hardship.

Conclusion

There are many unmet financial needs following a diagnosis of (breast) cancer even in settings with universal health coverage. Health care professionals may only be able to fulfill these unmet needs through multisectoral collaborations, catalyzed by strong political will.

Implications for Practice

As unmet financial needs exist among patients with cancer across all socioeconomic groups, including for patients with medical insurance, financial navigation should be prioritized as an important component of cancer survivorship services, including in the low‐ and middle‐income settings. Apart from assisting survivors to understand the costs of cancer care, navigate the complex system to obtain financial assistance, or file health insurance claims, any planned patient navigation program should also provide support to deal with employment‐related challenges and navigate return to work. It is also echoed that costs for essential personal items (e.g., breast prostheses) should be covered by health insurance or subsidized by the government.

Short abstract

Financial concerns related to cancer care are affected by patients' ability to meet the extra expenses, as well as by the legal, health, and social welfare systems in place. This article reports on the financial needs following diagnosis of breast cancer in a middle‐income setting with universal health coverage, focusing on health costs, non‐health costs, employment and earning, and financial assistance.

Background

Financial toxicity affects a substantial proportion of patients with cancer irrespective of health care systems 1, 2, including in settings with universal health coverage 3, 4, 5. Besides treatment and health care‐related costs, financial toxicity may also include financial distress associated with loss of wages, savings, or household assets 6. The financial distress brought about by a cancer diagnosis not only can have a negative impact on patients’ treatment choice and adherence to treatment, but also can lead to deterioration in the quality of life and psychological well‐being of patients and their families 7, 8, 9, 10. Although the financial impact of cancer is largely influenced by patients’ abilities to meet the extra costs incurred, it is also shaped by the legal, health, and social welfare systems in place.

Malaysia is an upper middle‐income country that has made good progress toward universal health coverage through a mixed public‐private health care delivery system, where patients have free choice between public and private care. Public health care in Malaysia, which is mainly funded through general taxation and delivered through the Ministry of Health facilities and several public academic hospitals, is free or near‐free at the point of service. Highly subsidized cancer care is available to all Malaysian citizens in public hospitals regardless of insurance status. However, the waiting times for diagnostic tests, certain treatments, and oncology appointments are long, because of shortage of manpower and resources 11. Furthermore, expensive targeted therapeutic agents, including trastuzumab, is rationed to a fixed number of clinically qualified patients based on available annual budgets. As a result, there is a flourishing private cancer care in the nation, delivered mainly through for‐profit medical facilities and funded by a mixture of out‐of‐pocket payments, private medical insurance, and employer‐sponsored medical insurance 12.

The ASEAN Costs in Oncology (ACTION) study had recently shown that a high percentage of cancer‐stricken households in the low‐ and middle‐income countries (LMIC) in southeast Asia experienced catastrophic expenditures and impoverishment within just 1 year from cancer diagnosis 2, including in Malaysia 5. However, the ACTION study was limited by the lack of finer details on various costs incurred by patients and their families following a cancer diagnosis, making it difficult to gauge the financial needs of affected households. Such information is vital for planning of financial assistance and welfare support services to reduce the risk of financial toxicity following cancer, as well as in designing benefit packages for health insurance coverage.

Qualitative studies have explored and increased the understanding on patients’ personal experiences with the financial burden following cancer 13, 14, 15. However, most of these studies were conducted in high‐income countries, which may not accurately reflect the experiences of patients from LMICs with cancer. We therefore undertook a qualitative study to gain an in‐depth understanding on the financial needs following diagnosis of breast cancer in a middle‐income setting with universal health coverage, with a focus on health costs, nonhealth costs, employment and earnings, and financial assistance.

Materials and Methods

Participants were recruited from a public Ministry of Health hospital (Kuala Lumpur Hospital), a public academic hospital (University Malaya Medical Centre), and three private hospitals (Pantai Hospital Kuala Lumpur, Subang Jaya Medical Centre, and University Malaya Specialist Centre) in Malaysia to ensure adequate representation of patients from various ethnic and socioeconomic backgrounds. Eligible participants constituted Malaysian patients with breast cancer who were diagnosed at least 1 year prior to the study. Patients with carcinoma in situ and recurrent cancer were excluded. Patients were identified by their treating physicians during routine follow‐up visits in the participating hospitals. Those who provided consent to be contacted were briefed via telephone calls and invited to join the study.

The focus group discussions (FGDs) took place at the respective hospitals where patients’ follow‐up occurred. Whenever necessary, the FGDs were separated into the three main ethnic groups of Malaysia (Malay, Chinese, Indian) and conducted in the local languages (Malay, Mandarin, Tamil) of the participants to limit possible language and cultural differences. Participants were also asked to fill out a brief demographic questionnaire and provide information on their medical insurance status. In this study, private health insurance was defined as medical insurance coverage bought and paid for personally by the participants or their family members, whereas employer‐provided health insurance was medical insurance coverage provided to the participants through their employment. A focus group guide that contained questions and probes about the various types of financial needs in relation to health costs, nonhealth costs, employment and earnings, and financial assistance was developed and used by the moderator during the FGDs. The content of the guide was validated and tested in a pilot study. All FGDs lasted approximately 2 hours and were audiotaped and transcribed verbatim. Discussions that were conducted in languages other than English were forward translated into English. Backward translation was also performed. Notes taken from the note taker supplemented the audiotaped transcripts. Data collection continued until no new themes emerged from the data.

Thematic analysis was used in this study. In the initial stage, data familiarization and collection were conducted. After data transcription, codes were extracted from the transcript to identify key themes and subthemes. Transcripts of the FGDs were also analyzed and compared with the analysis of the previous discussions. This helped to shape subsequent data collection and analysis. With regard to trustworthiness of coding, credibility was ensured through constant comparisons, triangulation, and member check. Two researchers coded and identified the final themes, which were then tested against the coded transcripts to ensure that they were representative of the data.

Ethical approvals were obtained from the Medical Research and Ethics Committee (NMRR‐16–2054–32802), University Malaya Medical Centre Medical Ethics Committee (2016105–4324), and Subang Jaya Medical Centre (201711.2). Written informed consent was obtained from all participants prior to the FGDs. Anonymity of the study participants and their statements in the transcripts were ensured, as was confidentially of the data.

Results

Data saturation was reached after 12 FGDS; 4 FGDs were conducted in each of the Ministry of Health, public academic, and private hospitals, respectively. In total, the study comprised 64 women with breast cancer. Median age of participants was 49 years (Table 1). Approximately 45% were Chinese. A majority was married (80%), had at least secondary level education (92%), and came from low‐income households (52%). About 70% of the participants had medical insurance coverage (private health insurance and/or employer‐provided health insurance).

Table 1.

Demographic characteristics of study participants

Characteristics	Overall (n = 64), n (%)
Age, yr
<40	11 (17.2)
40–59	48 (75.0)
≥60	5 (7.8)
Ethnicity
Malay	26 (40.6)
Chinese	29 (45.3)
Indian	9 (14.1)
Marital status
Single	4 (6.3)
Married	51 (79.7)
Other	9 (14.1)
Highest‐attained education
Primary	5 (7.8)
Secondary	33 (51.6)
Tertiary	26 (40.6)
Household income classificationa
B40 (<$1,045 per mo)	33 (51.6)
M40 ($1,045–$2,306 per mo)	17 (26.6)
T20 (>$2,306 per mo)	14 (21.9)
Type of hospital
Ministry of Health	24 (37.5)
Public academic	20 (31.3)
Private	20 (31.3)
Ownership of medical insurance coverageb
Yes, personal	27 (58.7)
Yes, employment	31 (67.4)
None	18 (28.1)

^aBased on findings from the Department of Statistics Malaysia, 2017. $1 = 4.09 Malaysian Ringgit.

^bMore than 100%, as participants may have had more than one type of medical insurance coverage.

Abbreviations: B40, bottom 40%; M40%, middle 40%; T20, top 20%.

Health Costs

Health costs are discussed in Table 2. Among participants from the Ministry of Health hospitals, the majority described conventional treatment costs as affordable and did not incur substantial financial burden in paying for their treatments. “After we get our bill from the government hospital, we are very, very thankful. It is still affordable,” said a 56‐year‐old Chinese patient from the middle‐income group who had no medical insurance coverage.

Table 2.

Subthemes and representative quotes for financial needs under the theme of health costs

Subtheme	Representative quotes
Poor insurance literacy	We just know that cancer is covered. 57 years old, Chinese, low‐income, personal medical insurance coverage I took life insurance and they said it covers 36 critical illnesses which include cancer. Only later when I was diagnosed then I know. They said it [cancer] should have spread all over the body, only then I can claim. 47 years old, Indian, low‐income, no medical insurance coverage
Underinsurance (high out‐of‐pocket, limit exhaustion)	They advised me to take hormone therapy for one year which costs about MYR150K (USD36K) [whole course]. The moment I heard the cost I said I don't want to undergo hormone therapy. My insurance will not cover the cost due the limit of my coverage plan…. I am struggling financially and I do not think I can afford it… I feel that financial crisis is worse than my health issues. 47 years old, Indian, low‐income, employment medical insurance coverage For adjuvant therapies I had to pay using my own money because there was no money left in my company insurance [after using it for surgery]. So basically, I suffered financially after my surgery. 39 years old, Malay, low‐income, employment medical insurance coverage
Reimbursement policies	That is a burden because you have to prepare the cash… so you have to always come out with the cash and claim later. And the claim may not come instantly. So you have to have cash in hand. That is the difficulty. 41 years old, Chinese, middle‐income, personal medical insurance coverage As a patient, it is a big hassle for us to go through the process of getting our claim form… they must make sure that the claim process is easy. But that's not the case, the process is very troublesome. They should have a systematic way to ease the process of preparing documents for claims. 47 years old, Indian, low‐income, employment medical insurance coverage
Coverage	It [mastectomy bra and prosthesis] comes to MYR1000+ (USD 241) which I am quite mindful. If the prosthesis is cheaper, then I will pay for it. But since it is over MYR1000, I am willing to forego it because of costs. 56 years old, Chinese, middle‐income, no medical insurance coverage I had a reconstruction surgery and that has to be paid on our own because it is cosmetic surgery. It costs about MYR 15,900 (USD3830). 44 years old, Malay, high‐income, personal and employment medical insurance coverage
Traditional and complementary medicine	I didn't really understand whether it was good or not… just psychologically… you know… if I don't go, feels like not good like that. But because it is too expensive so I decided not to go anymore. But whether it is good or bad, I really don't know… Because if you don't do it, it's like I am not doing my best. 65 years old, Chinese, low‐income, no medical insurance coverage

Although participants who were insured indicated that their financial burden in paying for conventional cancer therapy was alleviated by their medical insurance, many expressed that they had poor prior knowledge of their insurance coverage, such as the insured amount, benefit packages, and coverage limitations and exclusions. Such patients were “shocked” and distressed upon learning that their medical insurance policies were unable to fully cover their cancer treatment costs.

Notably, underinsurance led to financial hardship in some participants who still needed to pay out of pocket for certain aspects of their treatment that were not included in their benefit package. These women reported forgoing certain recommended treatments as they were unable to afford them on their own.

Some participants described experiencing financial burden only toward the end of their treatment when their insurance has been fully used up. Patients also mentioned that this led some of them who initially sought treatment in private hospitals to be referred to public facilities upon exhausting their insurance policy limits.

Participants also talked extensively on financial difficulties stemming from their insurance's “reimbursement basis” policy, as not only do they have to pay first and then proceed with the reimbursement paperwork, but they also had to wait for a long period for the claims to be reimbursed. These patients also reported being distressed because of the fact that they had to have “cash in hand ready,” which could be a huge sum at times, to pay for their ongoing treatments while waiting for their previous claims to be reimbursed. It was also emphasized that there remained an unmet need for a more efficient system to facilitate obtainment of the necessary supporting documents for their insurance claims.

The need to spend on essential items, such as breast prosthesis, mastectomy bras, corsets, and wigs, was repeatedly highlighted by a number of participants. Although women from higher socioeconomic status generally found these items to be affordable, those from lower socioeconomic status found them to be overpriced. Because of the high costs, some participants decided to forgo buying these items. A number of women also highlighted that they were “forced” to pay out‐of‐pocket for their breast reconstruction surgery, which was categorized by their existing insurance policies as a cosmetic surgery and thus not reimbursable.

Apart from spending on conventional medical care, participants also mentioned spending on traditional and complementary medicine, which was deemed as costly. However, most women felt compelled to spend on traditional and complementary medicine because of the need “to try.” As mentioned by one participant, even though she “didn't really understand whether it [traditional and complementary medicine] was good or not.” she felt like she was “not doing her best” if she “did not give it a try.”

Nonhealth Costs

The financial needs for nonhealth costs were found to be different depending on the participant's socioeconomic status (Table 3). Participants from lower socioeconomic status described facing difficulties affording very basic necessities, such as food, following their cancer diagnosis. Meanwhile, participants from higher income households brought up the need to spend on perceived “better” food, such as organic food, as well as dietary supplements. This substantially increased their household expenses, as they were not just spending for themselves but also for their families. Some patients also mentioned spending on appliances such as fruit juicers or special water filters.

Table 3.

Subthemes and representative quotes for financial needs under the theme of nonhealth costs

Subtheme	Representative quotes
Daily living	I didn't have enough money to run the family and had to return back to work earlier… There was a time when I gave my kids to eat fried rice and fried egg every single day… we didn't have enough money so I had to make sure the small amount of money we had will last the entire month. 35 years old, Malay, low‐income, employment medical insurance coverage For those who believe in their diet, they will go for more clean food, which is organic… food [expenses] definitely raise up like crazy, double, triple… Thinking for the sake of the other family members because you want them to eat well as well. 41 years old, Chinese, middle‐income, personal medical insurance coverage
Transportation	It is a burden. Because you must come for radiotherapy every day. Everyday parking is MYR3 (USD0.75). I came 23 times… That is not including the costs for petrol. 47 years old, Indian, low‐income, no medical insurance coverage Parking here is not cheap at all. And when you wait, its not just one or two hours. Sometimes half a day, sometimes even the whole day. 41 years old, Chinese, low‐income, no medical insurance coverage
Household help/childcare	I had to hire 2 maids to come once a week… I also had to hire someone to cook for me… I needed to rest. 44 years old, Malay, high‐income, personal and employment medical insurance coverage

Transportation costs to the hospital for treatment and follow‐up visits were also frequently reported as a burden by participants from lower socioeconomic status. As parking fees were mainly charged at an hourly rate, it became expensive, as participants from public hospitals tended to spend at least half a day in the hospital for their appointments. The cost for transportation further escalates for patients requiring commuting to hospital, for instance for their radiotherapy sessions. This was especially burdensome during the first year after their cancer diagnosis in which hospital follow‐ups are usually as often as every other week.

Participants from higher socioeconomic status also cited financial burden due to expenditures on childcare or household help following their cancer diagnosis. Despite the high cost, they viewed that these were necessary, as they were unable to care for their kids or perform household chores especially when they were undergoing active cancer treatment.

Employment and Earnings

Participants who were employed prior to cancer diagnosis reported financial burden upon diagnosis or after starting their cancer treatment. Many experienced reductions in income due to the prolonged unpaid work absences or reduced productivity. The loss of income not only strained household budgets but also exacerbated the burden of paying for health care and treatment costs (Table 4).

Table 4.

Subthemes and representative quotes for financial needs under the theme of employment and earnings

Subtheme	Representative quotes
Income loss	It was quite difficult [to pay for treatment costs] because the salary is not in. My budget was just enough for the household… It was very difficult for me at that time… When we have limited income, the budget is very tight. 35 years old, Malay, low‐income, employment medical insurance coverage I am self‐employed. For me, I go outstation a lot but when we get sick like this, what we target cannot reach, things like sales. 43 years old, Malay, high‐income, personal medical insurance coverage
Job loss	When I went back to work, the boss said he didn't need me anymore, that I don't need to come back… they fired me. 37 years old, Chinese, middle‐income, personal and employment medical insurance coverage
Workplace flexibility	I work in a factory so my job scope requires me to do heavy jobs. Even though the doctor advised me not to lift heavy things, I had to do it because it is my job. Even if I try to explain to my boss about my condition, they just disregard my complaints. 35 years old, Malay, low‐income, employment medical insurance coverage
Discrimination	I applied for a new job. But upon doing a background check they did find out that I have cancer. Although I satisfied all the requirements but my application was rejected because of cancer… This is like discrimination towards us. 39 years old, Malay, low‐income, employment medical insurance coverage
Impact on carers	My husband is a taxi driver. So when I have treatment, he can't work as he needs to take care of our 3 year old child… my cancer affected his income. 44 years old, Indian, low‐income, personal medical insurance coverage

Many study participants were unable to continue working following diagnoses with breast cancer. Although some employed participants voluntarily resigned, some reported being terminated as they were often absent from work while being on active treatment, or because of the side effects of cancer therapy. Although some participants reported that they received considerable support from their employer and were offered workplace flexibility such as reduction in workload or working hours, some participants reported that their employer and/or colleagues failed to show empathy and continued giving them difficult tasks. A few participants also described facing discrimination at workplace such as being overlooked for a promotion or in getting hired for a new job because of their cancer. Cancer diagnosis and treatment also adversely impacted participants who were self‐employed who reported decreased work productivity due to ill health.

“Although I am self‐employed. For me, I go outstation a lot but when we get sick like this, what we target cannot reach, things like sales…,” said a 43‐year old participant from a high‐income household who had personal medical insurance coverage.

In the discussion, participants also noted that their cancer diagnoses negatively impacted the employment and earnings of their spouses or caregivers, further diminishing their household incomes.

Financial Assistance

To cope with treatment costs and decreased household income, many participants described tapping into their personal savings, with some even exhausting their savings (Table 5). Participants also mentioned borrowing money from informal sources such as their relatives, friends, or even employers. As described by one participant, “somehow I have to look for money, if I don't, then I will die,” illustrating the dire need for money in this self‐perceived life or death situation.

Table 5.

Subthemes and representative quotes for financial needs under the theme of financial assistance

Subtheme	Representative quotes
Informal financial resources	I am facing financial difficulties, I have to withdraw my savings to support my daily living. 39 years old, Malay, low‐income, employment medical insurance coverage I have to ask for help from my relatives. Somehow I have to look for the money, if I don't then I will die. 59 years old, Indian, low‐income, no medical insurance coverage
Formal financial resources
Eligibility	They just said I do not have a valid reason to withdraw from my Employee Provident Fund (EPF) because I was only at Stage 2. Then I applied for Social Security Organisation (SOCSO) and the same thing happened. I was rejected because I was not sick enough and my case is not that serious. 39 years old, Malay, middle‐income, employment medical insurance coverage
Transparency and efficiency	My doctor say I am already stage 4, so I apply [for SOCSO] but they rejected me. They asked me to get the latest report to appeal so I went here and there to get medical report. but the report department ask you to wait one month for the new report. After that, I submitted to SOCSO and also have to wait to go for the interview. 51 years old, Chinese, low‐income, personal medical insurance coverage
Financial navigation	I wish there is someone to be in charge of the whole process. That will be easier. For example, a social worker or someone who is hired to specifically manage the claims. If there is a specific person, they can easily do the job. 51 years old, Malay, high‐income, employment medical insurance coverage A financial advisor. They [hospitals] should have a consultant, who can gather the patients and advise them on how to get money from SOCSO, or the government, or any charity organisation… to be able to advise the newly diagnosed patients on how to seek help financially… maybe include a consultancy to advise you on career issues too. 41 years old, Chinese, high‐income, personal and employment medical insurance coverage

Many participants highlighted their lack of eligibility to access formal financial resources such as from the Social Security Organization (SOCSO) or Employees Provident Fund. This was due to either their disease status or financial status, both of which were deemed not severe enough to receive financial aid. This rendered needy participants who were deemed “not ill enough” or whose financial statuses lay just above the cut‐off for financial aid, unable to access formal financial support.

The participants also highlighted the lack of transparency and efficiency in the application system for financial assistance programs. In the discussions, they frequently brought up their frustration with the lengthy, complicated, and tedious application processes. Despite taking the trouble to go through the “red tape,” their applications were often rejected without reasonable justifications.

The need for a financial navigator was also brought up by some participants. It was suggested that having a specific person to guide them toward the appropriate financial assistance programs, as well as in assisting them in the related paperwork, would be most helpful. Furthermore, the presence of a financial navigator to help with insurance claims was also deemed as a pressing need.

Discussion

This qualitative study provides an in‐depth understanding of the financial needs of women living with breast cancer in a middle‐income setting with universal health coverage. Overall, our findings illustrated that although all patients with breast cancer were financially impacted by their diagnoses, the type and degree of financial needs were largely influenced by an individual's socioeconomic background and type of medical insurance coverage. Irrespective of socioeconomic status, the financial impact of cancer was exacerbated when patients and their household members lost their income‐earning capacities postdiagnosis.

In the present study, patients seeking cancer care in Ministry of Health hospitals did not appear to incur substantial out‐of‐pocket costs for cancer treatment and health care, corroborating the findings of the ACTION study 5. This finding is not surprising, given that cancer care is heavily subsidized in Ministry of Health facilities, even when compared with public academic hospitals. The current study highlighted several financial issues among those with medical insurance. Underinsurance due to limited policy coverage for cancer care, and suboptimal reimbursement policies, were major complaints that warrant urgent attention. This is especially crucial as previous studies have reported highest distress and lower willingness to pay for care among underinsured patients facing unexpected treatment costs 16. Similar to other settings, it also appeared that medical insurance literacy was generally poor among patients with cancer, even among those from high‐income households 17. Interventions such as financial and health insurance navigation, more user‐friendly medical bills, and plain language communication on health insurance policies can improve medical insurance literacy not only among patients with cancer but also among the general population 18, 19.

The study also highlights the unmet financial needs for expansion of insurance coverage to include breast reconstruction surgery and essential personal care items, including breast prosthesis, mastectomy bras, and corsets among women with breast cancer, which are often overlooked. Unlike in some high‐income settings 20, these essential care items are not made accessible through government subsidies or reimbursed by medical insurance in Malaysia and other LMICs 21, It is nonetheless important to note that items such as external breast prosthesis have been positively associated with body image, sense of normality, and quality of life among women living with breast cancer 22. Therefore, it is strongly felt that these items should be made available through prevailing health insurance packages covering cancer care or government subsidies for needy patients without insurance.

As the financial toxicity of cancer is not just limited to the active treatment phase but extends into the long‐term survivorship period post‐treatment, cancer‐related expenses may have dire effects on household budgets and, subsequently, the ability to pay for basic necessities 5, 23, such as food, as was reported in the present study. Furthermore, participants from low‐ and middle‐income groups had repeatedly highlighted that transportation and parking costs posed a financial burden on their household expenditures. These expenses may quickly add up and negatively impact the prognosis, treatment adherence and patients’ quality of life 24, 25. The introduction of PeKa, a health care protection scheme meant for families in the bottom 40 economic category (B40; median monthly household income <$725) by the Malaysian government therefore appears timely 26. Under PeKa, Malaysian patients with cancer from the B40 group will be given ~$245 in phases to complete their treatment at government facilities. They are also entitled to receive a travel allowance to defray costs and medical equipment aid if needed. However, this scheme currently only applies to patients seeking care in Ministry of Health hospitals and not for patients from the B40 group seeking care in other public hospitals such as the academic and military hospitals.

A striking finding of the present study was the difference in types of nonmedical out‐of‐pocket costs that were considered financially burdensome between participants from different socioeconomic brackets. Whereas patients from lower socioeconomic status (SES) struggled to afford basic necessities, those from higher SES tended to express the burden of spending on items such as hired help, “better” food and/or supplements, and special appliances. Although different, these needs are important to the patients and their households.

It is interesting that many of our participants described making high out‐of‐pocket payments for traditional and complementary medicine following their cancer diagnoses, irrespective of socioeconomic status. Previous studies have found that compared with nonusers, complementary and alternative medicine users experienced significantly higher financial burden 27, 28. Although it can be challenging, health professionals should aim toward achieving a win‐win situation when dealing with patients’ wish to use and spend on traditional and complementary medicine. To cater for this, more research is needed to close the evidence gap on effectiveness of traditional and complementary medicine in improving patient‐centered outcomes. In this setting in which universal health coverage allows provision of subsidized cancer care through the public hospitals, it was striking that reduction in household income due to employment issues and/or reduced productivity at work was implied as an important source of financial distress. Our findings are consistent with results from a study conducted in The Netherlands, a high‐income country with universal health coverage, which reported unemployment and reduced employment as important drivers of financial toxicity among cancer survivors 29. The decrease in household income due to a cancer diagnosis further strains an already overstretched household budget, forcing many families to reevaluate their household budget, dip into their savings, or cut down on other expenses 14. The impact of income loss can be especially devastating for lower socioeconomic status households who have fewer financial resources to turn to when faced with the consequences of ill health 30. Whereas some of our participants were able to resume work normally after their treatments, many faced problems in returning to work due to discrimination and lack of workplace flexibility. Return to work is important, as patients with cancer often regard it as a sign of recovery to normality, which in turn is associated with a better quality of life 31, 32. All the above point toward the urgent need for development of patient navigation programs that also provide support to deal with employment‐related challenges, and return to work among cancer survivors. Nevertheless, the unmet financial needs among cancer survivors and their caregivers that arise from employment issues and income losses can only be addressed through multisectoral interventions, including legislative reforms to prevent workplace discrimination.

In Malaysia, financial assistance is available for eligible Malaysians patients via the SOCSO 33, Employees Provident Fund 34, and nonprofit organizations and religious bodies. Unfortunately, SOCSO has no specific schemes for cancer and only provides monetary aid to patients with terminal disease who are unable to work. Thus, cancer patients with metastatic disease are not qualified for financial assistance regardless of their socioeconomic or employment status. Our study highlights the need for a cancer‐specific scheme that provides financial protection to all cancer patients irrespective of disease stage, especially among patients from lower socioeconomic status in which loss of earnings can be financially debilitating. Furthermore, many of our study participants experienced difficulties navigating the complex system to get financial support, similar to findings from other settings 35, 36. Financial navigation programs may play an important role in assisting cancer survivors to obtain financial assistance. Nevertheless, it is also critical to revamp the application process for social welfare, including but not limited to application accessibility, transparency, and efficiency.

The qualitative approach of this study may reduce the generalizability of results and limit our ability to draw firm conclusions. Furthermore, as the study sites are located in urban areas, our findings may not be generalizable to patients with cancer from rural areas, who may have different financial needs that warrant further investigations. Despite these limitations, the present study has the advantage of reporting in‐depth diverse experiences with respect to financial needs, as we had included patients with breast cancer from a wide range of socioeconomic backgrounds with diverse health care use.

Conclusion

A cancer diagnosis financially impacts all patients. However, the type and degree of financial needs vary by the individual's socioeconomic background and type of medical insurance. Although private or employer‐provided medical insurance alleviated cancer treatment‐related financial difficulties, unmet financial needs may still persist. The financial burden arising from nonhealth costs among patients from low‐income households highlights the need for these patients to be navigated to appropriate social welfare schemes and financial aid. Importantly, the present findings also suggest that the existing social safety nets are inadequate to support needy cancer survivors, even in settings with universal health coverage. It is also strongly felt that items including breast prostheses and mastectomy bras are essential medical needs that should be covered by health insurance or subsidized by the government. The employment and income losses experienced by cancer‐stricken households underscore the compelling need for return to work and income protection schemes in middle‐income settings. There is also a pressing need to push for legislative reforms to address employment discrimination against cancer survivors.

Author Contributions

Conception/design: Yek‐Ching Kong, Li‐Ping Wong, Chiu‐Wan Ng, Nanthini Thevi Bhoo‐Pathy, Nirmala Bhoo‐Pathy

Provision of study material or patients: Nur Aishah Taib, Mastura Mohd Yusof, Azlina Firzah Aziz, Prathepamalar Yehgambaram, Wan Zamaniah Wan Ishak, Cheng‐Har Yip

Collection and/or assembly of data: Yek‐Ching Kong, Nur Aishah Taib, Nanthini Thevi Bhoo‐Pathy, Mastura Mohd Yusof, Azlina Firzah Aziz, Prathepamalar Yehgambaram, Wan Zamaniah Wan Ishak, Cheng‐Har Yip

Data analysis and interpretation: Yek‐Ching Kong, Li‐Ping Wong, Nanthini Thevi Bhoo‐Pathy, Nirmala Bhoo‐Pathy

Manuscript writing: Yek‐Ching Kong, Li‐Ping Wong, Chiu‐Wan Ng, Nur Aishah Taib, Nanthini Thevi Bhoo‐Pathy, Mastura Mohd Yusof, Azlina Firzah Aziz, Prathepamalar Yehgambaram, Wan Zamaniah Wan Ishak, Cheng‐Har Yip, Nirmala Bhoo‐Pathy

Final approval of manuscript: Yek‐Ching Kong, Li‐Ping Wong, Chiu‐Wan Ng, Nur Aishah Taib, Nanthini Thevi Bhoo‐Pathy, Mastura Mohd Yusof, Azlina Firzah Aziz, Prathepamalar Yehgambaram, Wan Zamaniah Wan Ishak, Cheng‐Har Yip, Nirmala Bhoo‐Pathy

Disclosures

Nirmala Bhoo‐Pathy: Roche, Pfizer Inc. (C/A), Roche, Pfizer, AIA Berhad, Novartis (RF‐unrestricted educational grants); Wan Zamaniah Wan Ishak: Regional CINV Advisory Board Member (Malaysia, Singapore, Philippine), Mundipharma Pte Ltd Lung Cancer Advisory Board, Boehringer Ingelheim, Malaysia Colorectal Cancer Advisory Board, Merck Serono Malaysia, ROCHE Malaysia Gastric Cancer Advisory Board, Eli Lilly Malaysia (SAB), Eli Lilly Malaysia, ROCHE Malaysia, Pfizer Malaysia, Merck Sharpe & Dohme Ltd, Eisai Korea, Eisai Malaysia, Mundipharma, Merck Serono, Roche Myanmar (H), Eisai Malaysia, Eli Lilly Malaysia, AstraZeneca Malaysia, Merck Sharpe & Dohme Inc, ROCHE Malaysia, Merck Serono Malaysia, Mundipharma Malaysia, Novartis Malaysia, Pfizer Malaysia, Amgen Malaysia (RF‐travel grants), Amgen Inc, MSD Inc, Roche, AstraZeneca Inc (RF‐clinical trial grants).

(C/A) Consulting/advisory relationship; (RF) Research funding; (E) Employment; (ET) Expert testimony; (H) Honoraria received; (OI) Ownership interests; (IP) Intellectual property rights/inventor/patent holder; (SAB) Scientific advisory board